tag:blogger.com,1999:blog-56677275184980264442023-11-15T22:53:27.899-08:00Noah's Miracle Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comBlogger587125tag:blogger.com,1999:blog-5667727518498026444.post-61751805779861191132020-01-29T12:15:00.000-08:002020-01-29T12:22:35.874-08:00They Are Not All Your PeopleYears ago when I started a handful of special needs parenting support
networks and sites it was a different world. The social climate was
very different. I'd blindly take on strangers onto my personal social
networking. I believed if they found me whether that be through mutual
friends, Noah's blog, or social networking or my various groups and
sites that they'd find commonality, advice, comfort and assistance. I
figured if you had a child with a disability you were naturally a part
of my tribe.<br />
<br />
But, I was so wrong. Just because a person has a special needs child,
doesn't automatically qualify them to be a part of your tribe. To
automatically deserve to be in your inner circle. I had to learn this
the hard way. First with little slow lessons. The occasional
off-the-wall special needs parent that went rogue and decided to post
inflammatory and intentionally agitating remarks, some that
intentionally came to peaceful places to instigate drama and conflict.
Some can't get past a very now competitive nature, a sense of jealousy
over who's child is doing better. I naturally give people too much
rope. It's in my nature. My very DNA. You see I've been that type of
too loving, too forgiving, and too trusting rather my entire life. And
when Noah came along perhaps those personal traits actually grew
stronger because then you start reinforcing it all with not wanting
others to have to go through what you went through you leave yourself
even more open. So you fall into a roll of the rescuer, the confidant,
the advisor. Many times I'd even put others ahead of my own interests,
my own well-being, my own set of life's circumstances if I could aid
another. I didn't need thanks, I didn't need any kind of affirmation - it was just more of me knowing I
was making a difference in some way in another special needs parent's
life. Or at least I led myself to believe that. I'm sure in many cases I
was simply used a stepping stone for a lead of help or avenue.<br />
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Not all special needs parents are on the same team anymore. And I can't
tell you the exact moment of that epiphany for me, I just know it to be
true. Mommy wars are exceptionally vicious these days, support groups
have turned into who knows better, who knows more or even a dictatorship
on how you should parent your own child, the therapies you should be
doing, the treatments you should consent to. It's often clicky,
immature, hostile and unkind. And trying to manage these really
aggressive personalities puts me in the line of fire more frequently
than I wish it did. I learned the hardest lesson over the course of the
last couple of years. And although it's not something that should be
discussed in the context of Noah's blog, it did stem from the belief
that I had that all special needs parents were inherently good, and if
there was something "off" that I'd chuck it up to typical special needs
parenting stress and strain.<br />
<br />
You can't assume that all special needs parents are going to be "your people." Not all of
them have good intentions, not all of them are on the same playing field
as you are. And no matter how much you wish to save someone from
themselves, you simply can't. And I wish I had understood that much
earlier on. If you find yourself in a situation where it feels very
much one sided, that this support isn't a two way street, the comradery
feels a touch sour, or abusive, or alarming, you have to realize that
these parents regardless of having a special needs child aren't a part
of your tribe. To hold them in a close space could be detrimental and
even dangerous to your overall well-being and safety.<br />
<br />
Our
personal space as special needs parent is often fragile. I refer to us
a bit like the walking wounded. We can function as if we've got it all
mastered; the sleepless nights, the insurance battles, the fight for
services, the lack of benefits, the financial strain, the worry and fear
about our child's life expectancy, watching them struggle, watching
your entire family struggle. All of that can leave us with a
vulnerability. We can have that door cracked even so slightly for
another special needs parent to have the power to make you feel small,
powerless, and find a way into your life that they shouldn't have
otherwise been entitled to.<br />
<br />
Just
because someone has the same dynamic that you do, that shares the
journey of having a child with special needs, doesn't give them
exemption from filling out that invisible application to see if they
have earned the right to be a part of your inner circle. Don't just
accept applications because you're lonely, because you feel like no one
cares, or because you need that desperate virtual hug from another
person. Chose your applicants wisely. Know if they are worthy of your
trust, of your care, your concern, and likewise if they have the very
potential to be there for you too. Special needs tribes and friendships
should be a two way street. Don't be afraid to ask for some character
references. If someone sends you a mutual friend request, ask another
friend is that a good person? How are they with you? Do you even know
them all that well? <br />
<br />
Protect your space. If someone comes at you or rubs your wrong, follow your
intuition. Block, unfriend, do what you need to do to protect that safe
space. You don't automatically have to keep someone or be friends with
someone just because their life mirrors yours. Not all special needs
parents will be your people. Pick your tribe carefully.<br />
<br />
Love, <br />
<br />
<img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: none transparent scroll repeat 0% 0%; border-bottom: 0px; border-left: 0px; border-right: 0px; border-top: 0px;" /><br />
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<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-7572430434552972852019-12-20T08:42:00.002-08:002021-04-28T14:14:46.876-07:00December Pain <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgemWI_MyaLQMDTiFl6MaPNXUbCF15Vmhbrl-kmOaknSH1R4KDR39pOujDREt5Svs08jdG92k0z7xE5YIXmjmFrSoWSSLNIOTF3DfLAt-RuAy8Alzzy-nHMkia6dIAELbGkKxRx7Cd3E1w/s1600/christmas+tear.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="544" data-original-width="640" height="272" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgemWI_MyaLQMDTiFl6MaPNXUbCF15Vmhbrl-kmOaknSH1R4KDR39pOujDREt5Svs08jdG92k0z7xE5YIXmjmFrSoWSSLNIOTF3DfLAt-RuAy8Alzzy-nHMkia6dIAELbGkKxRx7Cd3E1w/s320/christmas+tear.jpg" width="320" /></a></div>
Luke,
as most growing children do have an innocent curiosity about them. He
thinks absolutely nothing about blurting out "tell me about Noah's first
Christmas" at the dinner table - nor should he. A question that
shouldn't be a big deal for most, feels like being hit with a giant
unexpected boulder out of nowhere. Those questions - those unexpected
questions that you just either aren't prepared to answer or don't want
to answer, or even a mixture of both. Chris
took the lead, much to my relief. I didn't know where to start. The
pain inside me says let's skip to the easy parts, the hard parts need
not be mentioned for the sake of all involved.<br />
<br />
"We
celebrated Christmas late," Chris explained. He went on to address
Luke's puzzled expression, with a follow up that Noah was still in the
hospital at Christmastime, so we celebrated in January when we got to
bring him home. Luke seemed confused on how one could celebrate
Christmas in January when it should have been over.<br />
<br />
In
my mind I'm pushing down memories, terrible ones as the two of them
converse. The kind like where it all flashes before you again, the
priest, the rosary, that call saying he's not going to make it through
the night, the demands for a blood transfusion to try to keep his organs
alive because every part of him had been so deprived of oxygen - the
parade on television, being alone at the hospital without anyone,
wondering if my husband and son were fighting hard at another hospital,
wondering if I would even make it through any of it. None of that could
ever be explained to a sweet eight year old child at the dinner table.<br />
<br />
I
appreciated Chris skipping all of that to just explain we delayed
Christmas for Noah. Chris no more wanted to dive into the complexities
of pain than I did. Some traits are probably specific to how parents
like us process continual and ongoing pain - because that's really what
it is, ongoing. And some of it could be that we've learned this way of
suppressing past pain so we can get through each new day.<br />
<br />
It
bothered Chris in the same way it did me. I could tell. He made an
off the cuff comment not even an hour later saying at least Christmas
would be over in one more week. Luke asking him to build a gingerbread
house and Chris saying lightly and softly with a retreating voice, "not
tonight." I know... perhaps in the same way Chris knows the month of December is just hard.<br />
<br />
It's
really almost hard to even put into words sometimes, that tug of war
with being so incredibly joyful about Noah and his life, and the fact
that he's turning eleven in three days. A milestone in which neither of
us thought we'd ever see. Eleven. How beyond blessed we are for
eleven amazing years with this beautiful little boy. But it's that tiny
tug that creeps up when you least expect it, the tug that says it could
have been different, that tug of guilt that plays "what if" with my
soul. The regret that I didn't know my own baby was in distress, that I
couldn't save him from this forever fate.<br />
<br />
December
pain exists for so many families, Christmas for us is very
complicated. We are in a season that is naturally supposed to be
sprinkled with joy and magic, and we're pushing through what sometimes
feels like a perpetual emotional blizzard. We are neither between
Grinch or Fa La La La - but in this sense of feeling like you can't
catch your breath. Christmas cards go unopened, bills stack on the
counter, gifts that need to be wrapped feel like they are screaming your
name and you just want to see it through.<br />
<br />
December
can feel like onion layers at times, SSI battles, Medicaid appeals,
durable medical equipment appointments, credit card disputes, therapies,
private battles, and you're navigating circumstantial things with this
pain. And then there's the parts that are still overwhelming but in a
good way, the boys having breakfast with Santa, seeing the excitement
that exists in both of their eyes, North Metro Fire Department coming to
celebrate Noah's eleventh birthday --<br />
<br />
January
is right around the corner I tell myself. Hold on until January and
some of this pain might get packed away just like the Christmas
decorations for another year. Stored and packed away in a little box
that is in my heart.<br />
<br />
Love,<br />
<br />
<a href="https://blogger.googleusercontent.com/img/proxy/AVvXsEgmzPIIJkywcqRuUvohmEaQuJfOqur7gqffPp_76MMHV6p9wMiB9uWdiimZFhiTQa2GM7GYj_mEJYWCCmlmT8zwnIce6p3T8Qu2lpyfhwJIOMYqPHG7kQq4eQ-j85qjZ3eChOh_gB6M-iIhh4n5cbk2yDBZyLvcgg5BI7grUUN8WYTovteMlC_0gl9d03q2HWQstL6h" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: transparent none repeat scroll 0% 0%; border-color: currentcolor; border-style: none; border-width: 0px;" /></a><span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type"> </span><br />
<br />
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<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.
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I sit beside you in the pain, the loss, the grief, the sadness and that
longing that things were different.<br />
<br />
It's a side of the holiday season
no one discusses. In a time where we are supposed to feel magic, joy
and happiness we're feeling regret, blame, misplacement, worry and fear
and broken-heartedness.<br />
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I sit beside you as you tell your story about how you tried to pick out
the perfect Christmas tree and how forlorn and beside yourself you were
because your child had no interest in it. How you sat with your tears
crawling from the sides of your eyes trying to disguise how you wish he
was not non-verbal and unable to help decorate the family tree. How you
had to watch your typical child place the star on top of the tree,
knowing your other child will never be capable of that.<br />
<br />
I sit beside you as you mourn the loss of your child that passed away four
months ago. I see you post daily in support groups about your
continuous heartbreak and profound grief. I sit beside you in the
moment of the piercing sound of Christmas music in stores, as you glance
at a bedroom that you can't bring yourself to change or touch, to not
want to decorate or bake cookies because it feels like a betrayal to the
child you so desperately miss.<br />
<br />
I sit beside you when you're at a toy store feeling so lost because you
know that nothing in that store is appropriate for a child that cannot
sit, walk, talk, crawl or self-feed, and you feel like all eyes are on
you with a child in a wheelchair knowing that people feel sorry for you
and are secretly relieved they aren't you. I sit beside you as you
quietly shrink inside and hold back the tears that inevitably fall upon
your steering wheel when you get to your car.<br />
<br />
I sit beside you in the awkward silence that your extended family
displays, as a family in-law criticizes you for the lack of progress and
recovery your child has made this year. You cringe and bite your
tongue and hold fighting back because you're so wounded that family
could be so cruel and imply you aren't doing enough - not trying hard
enough to find recovery for your child. Feelings of blame and fault
fester as you pour egg nog into glasses with a smile trying to pretend
you're okay.<br />
<br />
I sit with you as you ache for your child to have the physical abilities
to open and unwrap Christmas presents under the tree. How you patiently
hold her in your lap assisting her gently and making sure that she
knows it's okay that she can't do these things because you still love
her with all your heart and then some. You feel so protective and proud
that she's still here with you that her not being able to open a
present feels obsolete in the bigger picture of the blessing.<br />
<br />
I sit with you as you pour your heart out and vent your financial
frustrations that you can't keep up with the demands of out of pocket
therapy, medical, equipment costs stacked up against needing to provide
Christmas gifts and food for your family. I sit with you, as you swallow
your pride super hard as you seek out assistance from food banks and
non-profit organizations assisting families like yours at the holiday
season.<br />
<br />
I sit with you as you crumble inside because you over hear another mom
bragging about how she made brownies for her child's school Christmas
party, while you are getting your double shot latte. You feel
inadequate and helpless and are doing all you can to stay on your feet
after an all-nighter with your child who has special needs and you think
to yourself will any of this get any better? I sit with you as you
camouflage how tired you are, and how you don't want anyone to see you
are less than brave, less than courageous facade. I sit with you, as
you just want someone to hold you in that uncertain and scary place of
never knowing if you will have a tomorrow with your child.<br />
<br />
I sit with you as the timing of another diagnosis hits you in the middle
of Christmas decorating and feels like a natural disaster has taken hold
of your soul. I sit with you as you throw an entire box of glass
ornaments against the wall and into the fireplace with hysterical
screams of pain only angels can hear. I sit with you knowing that
things may never be okay or normal again.<br />
<br />
I sit with you as you hold that tiny hand of a precious child you brought
into this world as they lay helplessly in a hospital bed recovering
from another necessary life-saving surgery. I sit with you as you beg
for prayers in all directions and ask God to spare taking your heart and
will to live away. You're stoic in the moment, and unwavering with hope
and faith, but deep down your only Christmas wish is just to be home
safe and sound to be able to celebrate one more Christmas together.<br />
<br />
I sit beside you as you have to decline holiday party invitations knowing
that your child's sensory processing disorder could never handle it and
that you don't have any respite for a date night with your spouse. I
sit beside you as you feel lonely, isolated and feel like life is
standing still for you and revolving for everyone else around you.<br />
<br />
I sit beside you because no one else will. I sit with you in the silence
and everything in between. I sit with you on the stormy nights of
uncertainty. I sit with you because we're all in this together in a
place we never thought we'd be. I sit with you because Christmastime is
hard. I sit with you because it's okay to say that out-loud. I sit
with you in comfort, love and light.<br />
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<br />
Love, <br />
<img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: none transparent scroll repeat 0% 0%; border-bottom: 0px; border-left: 0px; border-right: 0px; border-top: 0px;" /><br />
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<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-32803431797192676652019-11-27T09:53:00.000-08:002019-11-27T10:01:35.247-08:00A Family of Miracles - Brystal Sonoma's StoryToday marks the one year anniversary of the brutal and vicious attack of
one of our beloved Cairn Terriers, Brystal Sonoma. She was in the
comfort and safety of her backyard when a coyote jumped the fence.
Brystal is such a soft soul. Both of our cairns
have qualities specific to my personality (as most dogs do). Hollie
Edelbrock is brave, protective, loud, loyal and loving. Brystal is
tender, wants to make friends with everyone and anything, she wants to
lick your wounds, and is a natural healer and most
of all trusting. That trust allowed her to fall pray to a Coyote.
Hollie's instinct was to run for safety, Brystal's was to run towards
unknowing danger in the form of what she thought was a friend.<br />
<br />
Brystal's jaw was ripped at the hinge and broken in three places,
multiple puncture wounds throughout her small and fragile neck. Her jaw
bleeding profusely hanging from her head, but still had the wherewithal
to run despite her severe injuries into the house
and under a bed seeking safety to save her own life. I called the
nearest emergency veterinary clinics, at 7pm at night they all denied me
care due to being too busy. I told them I was coming anyways and that I
would not let them turn me away.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ2OoNJ-1VEqVYURVV0pzS9k1hF6qvu4gXMUmCWygdVipOBz-6PD3eAvPASMUfg39V3XpglPIeUVztNtmhfLXDId9NPydaBCk4GD4I7-RZnVDEGz81n9UFKlUF5j8Znq65ycZUcMAk7do/s1600/Bry2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ2OoNJ-1VEqVYURVV0pzS9k1hF6qvu4gXMUmCWygdVipOBz-6PD3eAvPASMUfg39V3XpglPIeUVztNtmhfLXDId9NPydaBCk4GD4I7-RZnVDEGz81n9UFKlUF5j8Znq65ycZUcMAk7do/s320/Bry2.jpg" width="240" /></a></div>
<br />
Brystal was clearly in so much pain, shaking, in shock and suffering
from tremendous trauma. But the look in her sweet eyes said nothing but
please help me and that I'm sorry. She was sorry that she was in this
position, to no fault of her own. She paced
back and forth, breathing heavily through the pain. It felt like it
took forever to get her the morphine she needed to ease her pain until
we could truly assess the extent of her injuries. The emergency clinic
worked fast, xrays were done on the spot - the
prognosis a bit grim. She was stabilized overnight, but her injuries
were so extensive that no local vet could assist. The vet didn't give
us many options or hope, it was rather the secretary who whispered take
her to VRCC - Veterinary Referral & Critical
Care. And told us they would be able to help. The drive was super
far, and my husband and I left Noah and his brother with respite, and
made the long hour drive there.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwm-ucHAhOA7tUtvzn_rY7XCSnQ7qRlqdXWvr0WQJjrV4KXwKHdZholeUHd8AcZb2NQmzzDioJVWLgrIXkW7aFJCfh1r4BiV9jjFSki9Oc7Qy-Ql4jfBp0C3twLz0z35NGy6OLddkxwoU/s1600/brystal+10.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1280" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwm-ucHAhOA7tUtvzn_rY7XCSnQ7qRlqdXWvr0WQJjrV4KXwKHdZholeUHd8AcZb2NQmzzDioJVWLgrIXkW7aFJCfh1r4BiV9jjFSki9Oc7Qy-Ql4jfBp0C3twLz0z35NGy6OLddkxwoU/s320/brystal+10.jpg" width="240" /></a></div>
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</div>
They assessed her quickly and made the determination that they thought
that they could fix her - that she had the small potential to survive.
But it would come at a great cost. It was already $2,000 to get it
through the night at the emergency clinic, we
were facing another $4,000 for life-saving surgery of repairing her
jaw, and then another $4,000 after that for reconstructive internal
mouth surgery, and bone grafting. No one wants to hear that, especially
when you are a special needs family who is already
financially struggling with out of pocket medical, therapy and
equipment expenses not covered by insurance.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN1yuCSEc-FHfa5XPCGADY0APt3RrckrncngJIr4eNW2PPsLJc86SR4U-AcrUYcDgh_gGNIlOGL4JQvnflOvRyVb0_Qb553S9ZtIUgtuOTSZcF1Tr4-MbSyEfNZ9e6tx8uyYZLPJeNhTg/s1600/brystal+5.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN1yuCSEc-FHfa5XPCGADY0APt3RrckrncngJIr4eNW2PPsLJc86SR4U-AcrUYcDgh_gGNIlOGL4JQvnflOvRyVb0_Qb553S9ZtIUgtuOTSZcF1Tr4-MbSyEfNZ9e6tx8uyYZLPJeNhTg/s320/brystal+5.JPG" width="240" /></a></div>
<br />
But we believe you can't put a price on a life - not even a dog's.
Every single life should be fought for - and God willing you figure it
out as you go.
We consented to the surgery and the costs and less than two hours later
Brystal was in reconstructive surgery. We sat, we waited. We stayed
until she was out of surgery and it was a success. They drilled through
her jaw with an exterior x-fix, and braced
the broken jaw and placed it back in place. She looked terrible, and
the device looked heavy and uncomfortable. But, we were far from out of
the woods. The chance for infection high, we'd have to figure out how
to get her to eat - and stabilize her for
the next four months until she could heal and have additional surgery
to remove the x-fix and then reconstruct the inside of her mouth with
bone grafting and tooth removal.<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2WonKJrOWc2O79qu8dlJs4MVUza_PvZzR8TOJR9F4hFf3B6bV5P1zM6dFM6_4Z1MWv5yTErIabu8_aIjJSy6GnjQD3cP2GAdhDP_38ubDv9AjrkG0L7nbUIvM7qSOZ9fNlmR0AQTGBTc/s1600/brystal+11.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2WonKJrOWc2O79qu8dlJs4MVUza_PvZzR8TOJR9F4hFf3B6bV5P1zM6dFM6_4Z1MWv5yTErIabu8_aIjJSy6GnjQD3cP2GAdhDP_38ubDv9AjrkG0L7nbUIvM7qSOZ9fNlmR0AQTGBTc/s320/brystal+11.jpg" width="240" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpUdvoNgsMYbEDrt9wBJ6ZuFUA750NgWJbs8bOgWROmS1zm6BAuF9hrEEV6HfZGuWVd3v57reILW3JzzZIwavdQ-NFm142iMCCo-F1_OOcSjZt5LYG1x4VHZoP6TbEEAT0nzeJe_UTwNM/s1600/brystal+7.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpUdvoNgsMYbEDrt9wBJ6ZuFUA750NgWJbs8bOgWROmS1zm6BAuF9hrEEV6HfZGuWVd3v57reILW3JzzZIwavdQ-NFm142iMCCo-F1_OOcSjZt5LYG1x4VHZoP6TbEEAT0nzeJe_UTwNM/s320/brystal+7.JPG" width="240" /></a></div>
Brystal is a non-complainer. And her tolerance for pain much higher
than our other cairn terrier. Her will to live also significantly
stronger than what I think our other cairn could withstand. If any dog
had a chance it was Brystal. The world's smallest
fighter.<br />
<br />
I've seen that same fight drive in Noah. That will to live. That I
will fight at any cost to be here - even if it's not perfect.<br />
<br />
I was no stranger to that fight drive, and so I made the decision to fight alongside and do what I could.<br />
<br />
It was a very hard first few months. Brystal wouldn't eat, I was
forcing syringes full of water to keep her hydrated, and ultimately had
to resort to pureeing all her food and syringe feeding her that too.
Slowly she'd eat strange things like tiny amounts
of canned tuna, or sliced deli turkey. We tried every soft dog food
brand on the market, I must have spent hundreds of dollars trying and
trying some more. I tried to put the costs out of my mind and just do
what had to be done. I know we were sinking ourselves
financially even more by making the decision to save her life. But she
was family. No one gets left behind. Not even the family dog.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgit1S16KHK-d6WRx2gwYS0J_7C8h7JCqvxwMv1gDGQ_Cvm4lqnTa-nK_tQaasQ-JZjyaoetiDgSvrYrrJipofhNGy4-nJ0ua31fbdcZPff_ZVuhyNZFFzhspTqoZ3e-m7D-Mzxj62ves/s1600/brystal+8+.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgit1S16KHK-d6WRx2gwYS0J_7C8h7JCqvxwMv1gDGQ_Cvm4lqnTa-nK_tQaasQ-JZjyaoetiDgSvrYrrJipofhNGy4-nJ0ua31fbdcZPff_ZVuhyNZFFzhspTqoZ3e-m7D-Mzxj62ves/s320/brystal+8+.JPG" width="240" /></a></div>
<br />
She'd have good days and bad days. The bad days were super hard as I'm
caring for Noah and then turn my back to see blood dripping all over the
floor feverishly from her mouth. Multiple emergency trips back one
hour each way - determined that the x-fix had
gone through several teeth and was now protruding into her tongue so
every time she moved her tongue it would be punctured and bleed. They
could do nothing to prevent that or it would harm the stability of the
x-fix. So, I'd be mopping up trails of blood
for months on end in addition to carrying for Noah's needs too.<br />
<br />
I never once thought of any of it as an inconvenience or burden. Not
Noah - not Brystal. Like a well-oiled caregiving machine I did what had
to be done. Three times a day forcing medication, three times a day
cleaning her x-fix that was crusty from blood
and fluids that leaked out of open drill sites on the exterior of her
mouth, faithfully applying saline and antibiotic ointment. It felt
touch and go, and I did a lot of praying that we'd get through it.<br />
<br />
And in April of 2019, Brystal had finally healed enough to have the
x-fix removed, but we weren't out of the woods yet. Two more surgeries
were in her future. She'd have to be sedated for the removal, and then
was facing internal mouth reconstruction two
weeks later. She came through the removal well, we were still guarded.
And two weeks later seen another specialist to reconstruct her mouth.
She lost almost all her teeth, many from being damaged in the attack,
many from being damaged as they drilled into
her jaw with the x-fix to save her life. But she came through both,
and with amazingly high spirits.<br />
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<br />
This dog is really a true testament to resilience and how much a life can withstand if they really want to fight to be here.<br />
<br />
By the end of it our bills collectively were over $7,000. Most of it
was put on credit cards, but it ultimately resulted in us having to
refinance our home over the summer. We have no regrets.<br />
<br />
Today, Brystal is thriving. She acts much like the energetic little
bouncy puppy that runs and skips along like a baby bunny would. She's
remains a delight to have, her spirit a reminder that you can get
through the worst that life can give you and still
find a happy ending. Brystal will celebrate her 14th Birthday in
March 2020. And her age was never a factor for us saving her life.<br />
<br />
We know that not everyone could understand or even agree with the
decisions that we made to save her life, and that's okay with us.
Having a child like Noah, and having to fight for his life I think left a
mark on us. And so when someone tells you there is
hope - you fight for that hope. God will see you through, it may be
incredibly hard and you may not know how you're going to make it happen
or get through it all. But, you will. You just have to have faith.<br />
<br />
So this Thanksgiving we are incredibly blessed to still have our little
Brystal with us. She was granted more time to stay, and we are so
grateful that we more days with her. Believe in Miracles - miracles may
not come easy - but they do happen.<br />
<br />
Love, <br />
<br />
<img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: none transparent scroll repeat 0% 0%; border-bottom: 0px; border-left: 0px; border-right: 0px; border-top: 0px;" /><br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-71628513812699679232019-11-22T15:09:00.002-08:002019-11-22T15:09:43.961-08:00Looking Back Maybe it's part of the human condition that purposely tries to block out
all the bad. If we dwell too long in the hardship then we lack the
ability to properly move forward. But occasionally, as life often does -
it will remind you time to time of the past.
Sometimes you have a profound appreciation for how far you've come, the
obstacles you've conquered, pride in perseverance - and other times
sadness that you ever had to be in that position in the first place.<br />
<br />
I've been on this special needs parenting journey now for more than a
decade. The past and present both bumpy. In the early days I didn't
really have any clue what I was doing. I was lost. Completely lost
without a roadmap on how to navigate anything.
Therapies, appointments, bad news, how to process even a multitude of
emotions that hit you simultaneously - the financial strain, the
sleepless nights, the endless worry - and the profound adaptation and
acceptance that your life will never have any sense
of the normalcy it once did.<br />
<br />
I got an email today inviting Noah to receive a letter from Santa
through a non-profit organization we used when Noah was days old called
There With Care. They are an organization that coordinates various
types of help. Noah was sent home on hospice of sorts
- the Butterfly Program. A team of people assigned to you that you
call to assist you with arrangements when your child passes away, and
alongside that came a There with Care referral. I couldn't return to
work, ultimately resulting in my resignation of
my decade long legal career, I lost my transcript business because I
couldn't keep up with the demands of running it while caring for a
neurologically distraught baby who's disabilities became more apparent
with each growing day, and voluntarily gave up assisting with a nursing
call center in the middle of the night. I found myself instantly
with large bills that Medicaid didn't back date for flight for life,
all the while trying to figure out how to feverishly pay our mortgage
and other bill obligations on one income. I wasn't present in the
moment. My heart was blown apart, my world felt
uncertain, and I kept focused on just simply doing everything within my
means to keep this precious little boy here on earth with me. <br />
<br />
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<br />
I had forgotten about There With Care - although they serviced us for
the first year, they brought us groceries, they provided meals, they
gave Noah baby gifts, and baby supplies that we needed. It's odd how we
don't really forget, but that we put things out
of our mind - to move forward with the next chapter or the next
challenge. Had I of not received that email invite to have Noah receive a
letter from them, I'm not sure that they would have crossed my mind.
Not even in the capacity to recommend that resource
to another family. Perhaps we block out such things for
self-preservation or because we are simply so overwhelmed that we're
trying to get from one point in our lives to the next.<br />
<br />
I had filed it within myself long, long ago. A place perhaps that was
dark and irresolute. I'm not sure what I would have done without someone
just navigating all of those types of things on our behalf in the early
days. It was like I was present - but not
fully present at the same time. Memories can be interesting like that
on the special needs journey. Where something can just instantly remind
you of a moment in time. And then again sometimes things come full
circle, a humble reminder of all the hard places
you've been and how blessed you're still standing after all of it.
Looking back is harder for me than looking forward. And looking forward
is still very scary too. <br />
<br />
Never did I ever imagine that the very organization that was our
life-line in the beginning would wind up sending my sweet Noah a
Christmas letter from Santa ten years later. Blessings never forgotten,
and blessings still yet to be received.<br />
<br />
Love,<br />
<img src="https://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: transparent none repeat scroll 0% 0%; border-color: currentcolor; border-style: none; border-width: 0px;" />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-28399105250701995872019-10-06T20:21:00.000-07:002019-10-06T20:21:15.430-07:00Raising Dion: Disability Hit and Misses I was really excited to watch the new series Raising Dion on Netflix.
Besides personally knowing the little girl who plays a supporting role
in the show, I was very pleased that the show cast a character that both
has a disability in real life and in the series.
Sammi Haney, plays a little girl named Esperanza, who is a friend of
the main character, Dion. <br />
<br />
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<br />
The premise of the show is a boy that has the sudden onset of
super-natural abilities, and the complexities of having those "super
powers" as a child learning to navigate them, and how his widowed mother
learns to cope with her child now being a very different
little boy, than the one that she was familiar with. The show
introduces Sammi's character rather early in the series which I was glad
to see.
<br />
<br />
However, my disappointment grew with each additional episode. The story
line was pretty predictable and felt like almost like a copy-cat to
most super natural television these days. The acting from all the
children was strong and their chemistry matched well with each other.
Watching Sammi act was much like knowing her in real life. She's just
naturally this charismatic sweet child, and you can't help but fall in
love with her. She's a child that exudes positive energy and
happiness. If it was dark out she'd literally light it up with her
personality like a glow stick, so I'm not surprised that
she was chosen for this role. <br />
<br />
That's part of the reason I'm let down with the series. They had this
huge opportunity to showcase her more, and she became almost hidden in
the background, with what felt like a guest appearance here and there.
<br />
<br />
The character of Esperanza is depicted as a child that sees herself as
"invisible." Her peers primarily ignore her, in fact even Dion finds her
annoying and through the majority of the series does his best not be
associated in any way with her as if she's an
embarrassment. It isn't until she serves Dion in attempting to
retrieve his asthma inhaler during a crisis at a birthday party that he
even gives the friendship a chance. The show has this precious character
in Esperanza and no one really wants to be her
friend - not even Dion in the beginning. <br />
<br />
One of the most redeeming scenes was one with Esperanza and Dion happily
sharing birthday cake in the back seat of her dad's van. I also think
they did a very poor job with the whole accessible vehicle when it came
to how Esperanza was transported around.
There are scenes where an apartment neighbor whom Esperanza's father
doesn't even know or is connected with is instructed to drive the family
van to get her to the birthday party. It was unrealistic that any
parent would hand over an accessible vehicle to
a stranger they didn't know to drive their disabled child anywhere.
Especially without any explanation as to why Esperanza's parents weren't
the ones driving.
<br />
<br />
The show had a perfect window of opportunity to show out of the gates
that children with disabilities have just as strong of friendships as
those without, and blew it. Instead they made Esperanza a cast out of
sorts, coming on strong wanting Dion desperately
to be her BFF, despite his first rejections of that idea. <br />
<br />
The show also took a turn I didn't really love. Instead of focusing on
this great story line with a child with a disability as a supporting
character, they decided to focus on racial profiling, which had nothing
at all to do with the story line. It felt forced
and out of place. As if they threw it in there to support a climate of
intolerance. I didn't love it. And then they took it step further to
imply that if you have felt that you were wrong by a racial feelings,
that revenge was perfectly acceptable as another
character trips the offender in a school hallway as a payback of
sorts. For a Netflix series dealing with a story line involving very
young children that all just missed the mark terribly for me. It really
was an out of place "problem" for the series and
didn't at all fit whatsoever with the point of the theme. The last
thing we should be promoting is a revenge-like thought pattern to a
childhood school injustice.
<br />
<br />
I kept eagerly awaiting for them to touch upon Sammi's diagnosis, or a
better explanation of why she was in a wheelchair. Sammi Haney has a
Osteogenesis imperfecta (OI), also known as brittle bone
disease. Never once was her diagnosis ever discussed much less
mentioned and Netflix had the perfect window to spread awareness about
the condition and just fell completely flat.
<br />
<br />
There is a moment when Dion uses his powers to assist
Esperanza with floating and standing as if he wishes to see her walk.
Esperanza gets very hurt by this, and it causes some minor hurt
feelings. Dion reflects on his actions with the help of
his mother's feedback and decides he owes her an apology where he
explains he realizes she is not broken and doesn't need to be fixed.
And while true, those with disabilities don't need to be seen as broken,
in some aspects the condition of OI does cause bones to break more easily. <br />
<br />
I'm really hoping there is a season 2 for Raising Dion
because they underutilized the character of Esperanza, and they could
have really done better showcasing a character with a disability.
Raising Dion was highly predictable and the use of the
music theme used in another Netflix series <i>Stranger Things</i>, was a dead
giveaway to the hidden villain. I wouldn't have stuck with it, had it
not been for desperately wanting Sammi Haney's character to be given
more screen time. She was just sprinkled about
almost as an after thought or what felt like a move to have one foot in
the door with the disability community.<br />
<br />
Dear Netflix, you can do a million times better. Now get
that Sammi Haney a leading role or at the very least show us that you
can step it up with a season 2. Don't leave Esperanza behind so much in
the background. And fix the tone you left us
with that those with disabilities are friendless, invisible and
annoying. They are anything but.
<br />
<br />
While I had hoped it would be a great family series for my
children to watch, I can't say that it meets the mark of the theme I
wish my children to see. I don't like the racial profiling theme nor
the depiction of revenge. I don't want my children
to think that those with disabilities naturally are friendless or have
to beg for a friendship, or to be seen as annoying or an outcast of
sorts. And the super-natural part with a person in a position of trust
being the villain made me very uneasy. You have
a very small child essentially engaging via texts on an IPad messaging
game with someone he thought he could trust who wants access to kill
him. Netflix in my opinion shouldn't be marketing this as kid friendly,
it was much too dark with tones that simply
didn't have as much of a positive message as they needed to have for
children. <br />
<br />
Here's hoping Netflix steps it up next time. This one misses the disability mark.
<br />
<br />
Love, <br />
<img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: none transparent scroll repeat 0% 0%; border-bottom: 0px; border-left: 0px; border-right: 0px; border-top: 0px;" /><br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-33122378795221846322019-10-02T19:02:00.000-07:002019-10-02T19:26:05.354-07:00The Nightmare called "The New Target"I don't think many people relish change. But in the land of special
needs sometimes the word change can send shivers up and down your spine
as you anticipate the shrill and shrieking of your child with special
need's screams if the unfamiliar gets yanked out
from underneath them. <br />
<br />
I kind of feel that same way with Target's new store make-over. It
seriously feels the moment you walk through the doors like someone put
you inside a snow globe and shook it up while you're spinning around
dizzy.
<i>What the hell?</i> feels like an understatement. People are raving
about how some Target stores now have a Disney section, and how home
decor just now sprouted as if Target just became a wannabe furniture
outlet in the middle of retail clothing and home
goods. Wasn't it enough to mix grocery and retail? Really Target.
You are blowing my ever loving mind.<br />
<br />
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<br />
And I liked Target.... the old Target that is. It ranked right up there
with my top fav's alongside Kohl's and continuous trips to Starbucks.
And as much as I dislike the special needs poem Trip to Holland, Target
feels a lot like that. I expected a normal
trip. A familiar trip. A vacation to potentially a mildly redesigned
store, that had more clothing and shoe options and maybe even sprinkled
with more organic food inventory.
<br />
<br />
What did you do to me Target? I can't even find the baby food section
anymore. As my child in a wheelchair stares at me like he's also landed
on Mars. Nothing makes sense. The layout is disjointed, the isles go
sideways and horizontally, and before you
know it you're staring at kitchen spatulas when all you wanted to do is
just find paper towel. And it's not all that wheelchair friendly. You
can easily get stuck on an isle with a grumpy person staring you down
so you know your only alternative is to throw
that wheelchair in reverse and attempt to find yet another small isle
to see if you can get down.
<br />
<br />
Why Target? Just why? <br />
<br />
This totally took your ranking of one of my top stores down to at least
15. I don't have the time to spend three hours touring your store for
the 5 things I simply need on my list before I both have to feed my
child and sprint to his therapy. I miss the store
I once knew. I miss the feeling of it being simple and easy, and now
it's complicated and hard. And I have enough hard in my life everyday
Target. From the moment I get up it's hard. Now you have to make my
retail experience hard too.
<br />
<br />
While I pout I will at least give you credit that you didn't eliminate
Starbucks and that that my internal GPS can at least still scout that
out, because right now that feels like the only benefit to even walking
into your store.
<br />
<br />
Signed one, sad, forlorn and lost special needs parent shopper.<br />
<br />
Love, <br />
<img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: transparent none repeat scroll 0% 0%; border-color: currentcolor; border-style: none; border-width: 0px;" /><br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-18391712779376694312019-06-09T13:16:00.003-07:002019-06-09T13:17:17.873-07:00Thunder & LilacsPerhaps it's been too long since Noah was really sick and I just became too comfortable in stability. Or maybe I try to purposefully block out the scary dark corners of his fragility so that I'm not overly frightened of what I know could happen in situations like these. I knew something was wrong by the sound on the monitor. That gasping, choking, blockage of airway sound that he makes. I ran as fast as I could, leaping over a dog in the dark hoping I could get there faster. It wasn't fast enough though, whatever had caused the airway blockage whether it be secretions or acid re-flux or a vomit that never made it to the surface of his mouth, it landed in his lungs- aspiration. I sat him up, yet I could still hear him struggle to clear himself. His father, looking on at us both in the doorway of his bedroom as I cradled him on the floor. We both knew. But had no words to even say in the moment.<br />
<br />
The following morning it was obvious that something was wrong. Noah's happy spirits were diminished. He was in and out of episodes of sadness, his motivation to furiously tear apart pages of coloring books had just vanished. And he just laid there looking at us as if the a bigger storm was brewing. Noah was giving us all the classic signs of things were taking a turn for the worse.<br />
<br />
We offered him a walk to give him fresh air around the block. Afternoon storms almost like clock work now, were moving in all around us. Dark heavy clouds, that were wispy and full of rain danced above me as if to remind me of my perpetual life's storms. We turned the corner on a path that leads to open space for as long as you can see. It's like looking at the ocean's horizon except it's all field for as long as you can see. And along the path every ten feet there are massive lilac bushes. The bushes so well established they are enormous in size and in full bloom. Their scent was overwhelming. Although pleasant under most circumstances, I found their alluring perfume to be invasive on my mood. The smell of something delicate and beautiful while I was under moving rain clouds above me, seemed off-putting. Almost as if nature was mocking me and laughing at my inner distress.<br />
<br />
Noah's cough presented itself loudly, almost as loud as the thunder in the background. I watched his little brother ride ahead of us on his bike focused on his little legs pedaling. Keep pedaling I told myself. We passed a new dog behind a residential fence on the path. Must be new neighbors. The dogs prior were obnoxious and loud and very ill mannered. They would startle Noah every time we walked by with their barking and antics. This dog, a pretty Irish Setter, stood stoic in one place right at the fence almost as if he was paying respects to Noah as he walked past him. I wondered what his name was, or even how much I appreciated his calm demeanor as we passed by.<br />
<br />
Noah coughed again, and my mind shifted from the dog to what my mind just wanted to forget. Noah was sick.<br />
<br />
Heavy guilt exists, like if I could have gotten to him more quickly, if perhaps if I hadn't fed him ice cream at the zoo too close before bedtime with a spoon he wasn't familiar with, if I had done this or that - then maybe the outcome would be different. An all too familiar feeling that I carry like a gorilla resting on my chest for years. If only I had birthed at a different hospital... if only I had looked at the ultrasound monitor myself... if only...<br />
<br />
The "if only's" can be so paralyzing. The mind's desperate attempt to go back in time and fix all the wrongs. But the "if only's" do nothing to help us in the moment. They merely haunt us because we are powerless to go back in time. And in the now, I have to deal with what is before me - Noah is sick.<br />
<br />
I dreamed of heavy rains falling down on the lilacs. They still smelled fragrant, and the moisture from the rain made them only intensify in deep purple color. Lightening hit a nearby tree, and I was awakened to the sound of Noah needing me in the night. A low-grade fever. I reached for the liquid suspension Advil only to find it had been expired since February of 2018. Over a year expired. I googled quickly the safety of an expired medication, and felt comfortable enough to give it to him in a pinch. He fell back to sleep rather quickly as I sat up in bed just thinking of those lilac bushes in the rain.<br />
<br />
It's odd where our mind wanders in times of great stress and fear. We fixate on things in the moment -- a bird... a lilac bush in the rain.<br />
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<br />
Love,
<br />
<img src="https://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: none transparent scroll repeat 0% 0%; border-bottom: 0px; border-left: 0px; border-right: 0px; border-top: 0px;" /><br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-76147541037327772232019-05-21T20:36:00.001-07:002019-05-21T20:47:47.684-07:00You Know Your Own Child Best Mommy
Groups. I think sometimes they can be the root of all evil. Social
media has developed into a very ugly thing. It's of course sprinkled
with hints of positivity, sometimes camoflaughed good intentions, and
even sometimes idiots in disguise. A forum where everyone thinks they
know it all, and are quick to cast stones. I used to be a bigger
participant than I am now in support groups, mommy groups or special
needs groups. Now I am merely mostly a fly on the wall watching the mud
slinging back and forth.<br />
<br />
Sometimes
I roll my eyes behind a computer screen at what people find critical in
their day; a mom complaining about how sexualized yoga pants are for a
sixteen year old and wanting the community to ban them from schools so
her son doesn't get a hard-on during math class; the parking line up at
school and who should get top priority of drop offs; neighbor complaints
- that's always a big one. Every one and anyone seems to get on the
world's nerves. Man you could walk to your mailbox in flip flops after a
snow storm and someone is going to post about it and how much your
freedom to do that ruined their day.<br />
<br />
I
ran across one post today though, which was like one of those what
place it is of yours posts. The kind where you're like butt out it's
none of your business. Even though everyone seems to think they need to
make someone else's business their business.<br />
<br />
It
was a mom, under the pretense of being an amazing friend. You know the
kind so amazing, that she doesn't want to hurt the tender and delicate
feelings of her close friend but feels obligated... no correction -
compelled to tell her friend that she feels that her child has special
needs because he's not developing or succeeding as fast as her child is
at the same age.<br />
<br />
Enter big eye roll. <br />
<br />
First, that's not true friendship. That's a competition of who's kid is
better, brighter, smarter and excelling quicker. Moms news flash:
it's not a race. If a child happens not to talk clearly as a toddler it
doesn't automatically mean they need a speech therapist. Trust me I
know this.<br />
<br />
Luke
didn't speak a word until he was three. Three years old. I didn't
sweat it. I wasn't saying oh God, I must have two special needs
children. One severely disabled like Noah, and one that won't talk to
me and must also be non-verbal. I had countless people cross lines with
me when it came to Luke as a baby and toddler. Many of which were some
of Noah's former therapists. They picked Luke apart with the
assumption that if Noah had a disability that therefore his little
brother was destined to as well. They see the correlation that you have
one child with a "problem" so they assume your other children will have
problems too. There was genuinely nothing more irritating than someone
trying to step in and tell me my other child also had problems.<br />
<br />
Luke
was focused on for being left-handed, for speaking later than most kids
his age, and for his need to be extra clingy and co-sleeping with us
until the age of five. I knew as a mother, there wasn't anything wrong
with Luke other than he was choosing not to talk. His receptive
communication with us was just fine, he was using gestures to get what
he wanted, and I knew what I was up against was that he had nothing to
model communication from when Noah was showing you could have your needs
met by not saying a word. As a mom I just knew there was no real
problem. I sensed it. I knew. You just know as a mom if you have a
child with a problem or not. You just do. All of us have that sense
about our children. And the day Luke decided to talk, it wasn't just
one word like momma, dadddy or ball. It was a full out mind blowing
here's your first sentence that I've been holding in for three years.<br />
<br />
To
this day, Luke is a naturally quieter child. He will only speak if
spoken to, and only if he feels like he wants to or it's worth his
time. But if he does watch out because he will talk your ear off -
especially if you mention anything about the ocean and sea life. But
there isn't a single thing developmentally wrong with him. He's still
left handed, but I don't see that as a disability, (or something that
needs to be corrected by tying your hand behind your back as a therapist
"kindly" suggested I do), and I happen to love that he's clingy because
I know someday he's going to grow out of wanting to hug and love on me
and blow me kisses before bedtime.<br />
<br />
I
can tell you a parent automatically knows if there is a problem or
something off with their child. They just will. It's evident to them
whether it be a sudden onset or something they have seen coming on all
along. And if they don't notice a problem with their child. Chances
are there isn't one. So you stepping in on a mommy board looking for
advice on the best way to approach your friend to tell her that you feel
her child needs a speech therapist, just because he's not keeping up
with your kid - signals to me that you aren't such a good friend. How about
you mind your own garden and tend to your own flowers. If a mom thinks
there is something wrong with her child she'll speak up and inquire and
ask and seek help. Stay on your side of the curb and don't play the
superior game my child is doing A, B and C before yours so that must
mean something is wrong if your child isn't keeping up with mine.<br />
<br />
Not
all typically developing children get to the finish line at the same
time. Same is true for children with special needs too. They are all
different. It's a mixed bag when it comes to who accomplishes what and
when. Everyone is on their own time line. It doesn't automatically
mean a child has special needs because they aren't keeping up with
yours. And it's really not your place to even suggest such nonsense.
And while you're at it, quit playing the passive aggressive I'm the nice
mommy just trying to help out my good friend. No you're not. You're
the mean mommy that wants to play I'm superior and so is my kid or you
wouldn't be posting on social media how best to approach your friend
with the suggestion that her child has special needs and needs a speech
therapist.<br />
<br />
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There
is no more single best expert in your child's life than you. And
people tend to either be so bored that they just can't mind their own
business or they purposefully find ways to be a problem for other
people. Don't let a "-foe-friend" in competition clothing bother you.
Just keep rocking your own mommy inner compass about your own child.<br />
<br />
Love,<br />
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</div>
<br />
<img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: none transparent scroll repeat 0% 0%; border-bottom: 0px; border-left: 0px; border-right: 0px; border-top: 0px;" /><br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-22107140366921218382019-04-29T20:58:00.001-07:002019-04-29T20:58:50.106-07:00I Communicate When I Cry When
Noah was a baby he cried for 18 hours out of 24. He was so distraught
as a baby. I'd bounce with him on an exercise ball to offer him
vestibular input, listen to the radio in a desperate attempt to soothe,
walk with him, hold him, rock him in my arms, lay him in a bouncy. I'd
do anything and everything and yet he still cried. The first year was
hard. Until one day he discovered the world of Elmo and Sesame Street
and just like that a light bulb went off for him and we found something
that offered him comfort. The TV. I thought I was going to lose my
mind. You could so much as smile at me that first year and I would have
broken down into hysterical tears. I was overtired, feeling like I was
failing, trying to navigate a world of therapies that I was unfamiliar
with, a new mom to a child with special needs and dealing with the most
distraught baby that you could ever imagine.<br />
<br />
Noah
is ten. He still cries. Not the same kind of cry as a baby. But
still cries and frequently. As a non-verbal child, it's often his only
way of communicating distress, pain, disagreement, agitation, or when
he's ready to leave somewhere, or even when he's ready to go and I'm not
moving fast enough for him. There are lots of reason he cries. Most
of which I know, and some that I'm still learning. I've never been a
cry it out method mom. Even for my typical child, Luke. To me when a
child cries, that means that they need you in some way. And comfort has
always been what my instinct has told me I need to do. It's still
like that if either of my children cries.<br />
<br />
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There's
been a lot of talk in the special needs community recently - especially
when it comes to a non-verbal child and do you let them cry it out? Do
you impose punishment? Or do you console?<br />
<br />
Noah
is cognitively very aware. He understands everything although he's
trapped in a body that is physically limited and challenging in every
single way possible. Yet, he still is learning to navigate an AAC
device, but even with a device - he's always going to have to rely on
communicating with us through facial expressions, through vocalization
tone and sounds, and through moods and emotions (example, being happy,
sad or angry). Non-verbal children just communicate very differently. <br />
<br />
Noah
will frequently have meltdowns or get angry and cry if something is
wrong - like his movie ended and I need to restart it, or if he's out of
coloring book pages to shred, or if his brother took a toy away from
him, if he needs to be changed, or if he's pissed off that his therapist
was scheduled to be here and she is sick or can't come for whatever
reason, or he doesn't get Chick-Fil-A on Thursdays.<br />
<br />
And
by meltdown it's the most heartbreaking cry you can imagine. The kind
that penetrates your soul where you just ache to make it all better.
Crying it out or punishing Noah for trying to be self-expressive to me
has always felt like a cruel approach. Not to mention that if I don't
find a way to soothe Noah or make whatever it is that is troubling him
better, he could frenzy himself so bad into vomiting, chocking and
aspirating because he gets so worked up. Being upset to Noah poses a
safety risk to himself. <br />
<br />
You
also can't negotiate with a child like Noah like I can with his little
brother Luke. I can't make deals, or bribe with treats or toys - it's
an entirely different ball game. A lot of parents take the approach
disabled or not that kids are kids and both deserve to have the same set
of punishments or rewards. But raising two very differently-abled
children I can tell you that rewards and punishments are not even close
to being the same between a disabled child and a typical child. Noah is
by definition severely disabled. He can't walk, talk, crawl, sit or
self-feed. I can't say to him you deserve to sit in a corner, or be
banished to your room until you chill out, calm down or quit crying.
Likewise, there isn't anything Noah has done wrong other than try to
communicate to me that something is wrong and he's trying to tell me
what it is. That's not a crime, never will be. Nor do I view it as any
form of manipulation on his part. He relies on all of us - the entire
family unit to assist him with his needs, his wants, and to help him be
comfortable, healthy and happy.<br />
<br />
To
punish Noah for trying to vocalize a problem he is having would be a
tremendous disservice to encouraging him to find ways to communicate
with us - even if it's in the form of crying or screaming he needs to
find ways to get our attention. As Noah grew older, and the crying
continued way past that of a normal age of a baby and toddler, I would
stop and think about how I'd feel if it were me. And I were trapped in
this body, fully aware and completely unable to tell someone that I
needed something or that I was upset. And I would look at him with such
admiration for not screaming every single second of the day because
damn it's got to be hard to be him. And he's really a joyful kid for
the majority of the day. He has learned the art of using the crying and
screaming when he needs to use it. It's not his state of perpetual
unhappiness. <br />
<br />
And
sometimes Noah is like the rest of us - where he just needs to be held,
reassured and loved on and consoled through a rough emotional moment. I
never want to find ways to discourage him from using any form of
communication he needs - even if that is crying and screaming. I don't
see Noah as being spoiled, I don't see myself as encouraging bad
behavior from him, and I don't see myself as a parent who is failing him
because I'm teaching him that he can't always get his way. Sometimes a
child like Noah simply does need to get their way. And that's okay.
There's nothing at all wrong with that. He's always going to be fully
dependent on someone his entire life. Promoting all forms of
communication in our house has always been our goal. And when Noah
cries, it's our job to figure out why (because there is always a reason
behind it), and help him through the moment. <br />
<br />
It
might look to an outsider like we're not disciplining our child, or
that we are promoting them acting out. Know that crying and screaming
for many non-verbal children is just another way of communicating. Trust
that we know what we're doing a special needs parents.<br />
<br />
Love, <br />
<div style="text-align: left;">
<a href="https://blogger.googleusercontent.com/img/proxy/AVvXsEgmzPIIJkywcqRuUvohmEaQuJfOqur7gqffPp_76MMHV6p9wMiB9uWdiimZFhiTQa2GM7GYj_mEJYWCCmlmT8zwnIce6p3T8Qu2lpyfhwJIOMYqPHG7kQq4eQ-j85qjZ3eChOh_gB6M-iIhh4n5cbk2yDBZyLvcgg5BI7grUUN8WYTovteMlC_0gl9d03q2HWQstL6h" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: transparent none repeat scroll 0% 0%; border-color: currentcolor; border-style: none; border-width: 0px;" /></a><span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type"> </span></div>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.
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yucky gift that keeps on giving. The one you wish you could either
return or say you never wanted, yet it's just there. Lingering, like
this permeating scent that infiltrates your soul.
There are things that just bring you back to that moment. It can be a
hospital setting, it can be a familiar smell, it can be a memory of a
stuffed animal, a picture, an old blog. It can be thousands of things
or just one single thing all at the same time.
While I'm waiting for Noah to wind down which takes hours - and by
hours I mean I can sometimes be up all night, I often fill my moments
with reading and television programming to keep me alert while I tend to
his needs at night. I latch on to a variety of
shows, Netflix documentaries, and movies to keep my mind engaged so I
don't fall asleep until he's done needing me.
<br />
<br />
It's Tuesday. Tuesdays are <i>This is Us</i>. I kind of had this gut feeling,
or inclination when Kate, one of the main characters got pregnant that
it wouldn't be a smooth sailing birth or even one that leaves her child
with disabilities. The show is really about
continuous life hardships without that glossy happy ending that so many
people crave. I know what it's like not to have a happy ending, so I
often gravitate towards things that feel real, authentic and far from
sugar coated. Tonight was the night I anticipated
- the birth of Kate's baby and one that wasn't going to be the great
happy ending.<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
Chris came into the bedroom to help me fold towels that I left in a
basket half way through the episode. He sensed that I was tired and
worn and took it upon himself to fold while I laid curled in a heap of
pillows hiding tears welling up in my eyes. He glanced
at me and utter those words "what's wrong" before he looked up and
realized that I was watching something difficult to absorb and digest.
He walked around the other side of the bed to me, bent down to hug me,
wiped mascara that had smeared through a handful
of tears that had escaped, and stood back up and just stayed by my side
holding my hand for the entire last half hour of the show.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLPa-pIb-MoAIqOtRha0e1DjXMs08x3uz8x-FvYQZE6UBf-DiX5OaXEZBorDZx_JwzZrssrQAYB8Oeph78gNIyHQI7AzAdl5tPbMs60W1z2MFOVVjmDH781Ek0swq_wulI8q8y4QSMAog/s1600/holding+hands.jpg" imageanchor="1"><img border="0" data-original-height="960" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLPa-pIb-MoAIqOtRha0e1DjXMs08x3uz8x-FvYQZE6UBf-DiX5OaXEZBorDZx_JwzZrssrQAYB8Oeph78gNIyHQI7AzAdl5tPbMs60W1z2MFOVVjmDH781Ek0swq_wulI8q8y4QSMAog/s400/holding+hands.jpg" width="320" /></a></div>
And I could feel the emotion through his hand. It bothered him too. We
were both there. And it's unique to both of us having fought through a
very scary birth, emergency c-section, and one that literally left Noah
and I in critical condition, and ultimately
severely disabled for the rest of his life. So when you see a story
line that eerily mimics what we experienced it takes us both back to that
moment that we so desperately wish we could change.<br />
<br />
And sometimes a show can get it super close to what it's all really
like; the family dynamic, the waiting room agitation, the lack of
information about what is happening to your loved ones, waiting for news
that isn't timely, right down to having your own memory
association with familiar places and things that take you back to your
own personal tragedies. The stunned husband trying to deliver the news,
both a mixture of relief that both survived, but conveying the news that things are problematic.<br />
<br />
Chris is always so stoic, he's just this beautiful rock and has been our
entire marriage. The greatest man I've ever known. He's strong, and
comforting, and understanding that we're going to live with these
feeling for a lifetime, and he offers such grace
about that fact. We will to some degree always be 'walking wounded
parents'. And we're okay with that. We don't ever try to hide or
disguise that these feelings will creep up on you from time to time.
And I'm comforted in knowing we're both feeling the
same things. It's ours alone, and something we carry together. And
through the underlying sadness of what happened to Noah has solidified
us in the most indescribable of ways.<br />
<br />
I'm grateful that he holds my hands through the sad parts, whenever they
may hit. Sometimes, these feelings can happen to you out of the blue,
sometimes you can kind of anticipate them. But we're together in it -
whenever it does. Story lines that you could
have written yourself sometimes prove to be a bit hard to swallow
sometimes. I think perhaps in an odd sort of way it's cathartic or
therapeutic. It feels a touch like purging a bit of stored up feelings
each time. A sense of relating, empathizing, and
knowing the journey. It's not an easy one for anyone that has been
through it. We're in this permanent club that no one ever wants to be
in. <br />
<br />
Our love is so strong because we've been through the worst of the worst
and have faced so many challenges throughout the years with Noah, and we
both are in it together. Holding each other's hand as each of us
remembers from time to time.
<br />
<br />
<i><span style="font-size: large;"><span style="color: #4c1130;"><b>"What cannot be said will be wept"</b></span></span></i><br />
<br />
Love, <br />
<img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: transparent none repeat scroll 0% 0%; border-color: currentcolor; border-style: none; border-width: 0px;" /><br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-40493714517510791142019-03-05T15:57:00.001-08:002019-03-05T16:19:01.080-08:00A Miracle in Heaven (A Letter to Noah) Dear Noah, <br />
<br />
We learned today that your the man that came to your bedside when you
were removed from life support as a baby and the one who played a huge
role in your miracle went to heaven on February 16th. Your father and I
are still trying to absorb this news. There
are a lot of feelings for us, because in our hearts and soul we know
that you likely wouldn't be here had it not been for Bill. All of us in
that room witnessed a miracle. You went from imminent death instantly
to breathing on your own and your oxygen saturation
coming up within seconds of him placing his hands on your tiny foot and
praying. There was no scientific or medical explanation for your why
you didn't go to heaven. It was also impossible for a stranger to get
into the NICU without being on any approved
list. Yet, here he was this man named Bill who said he was sent to
pray for you. No one even knew we were taking you off life support. We
told no one, not even our families of the time we'd were going to do
it. Only God knew. And he sent you the most beautiful
miracle in the form of this stranger, named Bill. He held your foot
and you looked up at him and held his wooden cross. Even though to this
day you cannot hold anything in your hands, you were always able to
hold onto that wooden cross around his neck.
<br />
<br />
Bill was one of those very special beautiful souls. He just was so
authentic in his faith, and radiated with goodness. And he believed in
you so much right from the very start that he gifted us with the prayer
of healing. I know there are people who can never
understand the gravity of what we witnessed happen. You would have had
to have been there to see it. But your dad and I know without question
that you wouldn't be here today without him.
<br />
<br />
We've decided not to tell you about Bill's passing. Not because we want
to keep things from you, but because we know that the heartbreaking
pout we'd see in your face, and the said deep sorrowful wail that only
you know how to deliver in moments of your own
sadness. And for me, I suppose in some way, I worry that the knowledge
of his passing may have some effect on your drive to continue thriving,
as odd as that may sound because the two of you were uniquely
connected. <br />
<br />
It's been several years since we last seen Bill, he fell ill with
cancer, and our lives were filled with days of therapies, appointments
and challenges. Although I knew that Bill had fallen ill, I was in
denial that he wasn't ever going to fully recover or
get better. After all how would it ever be possible that God would
call an earthly angel home? I kept reassuring myself that Bill had more
work to do here, and that he'd surely make it to 100. Bill died, just
days before his 80th birthday. I feel deep
regret that I didn't work harder to get you to see him one last time
while he was sick. And I'm sorry for that Noah. He loved you so much.
He'd make your picture a screen saver on his computer, he created a
prayer line in your name, where thousands of people
all over the world would write in to noahprayerline1@comcast.net and
hundreds of people poured into prayer all on behalf your namesake and
the miracle of life you had been given. He was always there for our
family, he offered spiritual words of encouragement, enlightenment on
the hard days,
and always the power of prayer. <br />
<br />
Bill was so devoted that he was also there the day that your little
brother was born he stayed countless hours while I was in labor. I
think deep down he wanted so badly to protect your little brother in the
same way that he did you and to see both of you
into this world to live and be well. Luke's birth had it's own set of
complications and I just remember him saying that things would be fine.
And I felt this divine reassurance that we'd all be okay. And although
Luke never had the same connection you did
to Bill, I know that he cared for you both very much. It just feels so
surreal. I know that Bill has to be up there checking in on you. How
could he not be? So we're going to just keep operating on that, as if
Bill is still around. Because I can't bear
the thought of you knowing of his passing. Someday when the time is
right your blog will belong to you and you'll know. I'm sure
he's not far away from you. You were always a pretty big deal to him
and I know even beyond this earth still remain so.
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlLPd2rZc_M1rEf29myt9Xgs3jOT5MOukV2Ntkgvc0Jp2GkCAqEs7EXNdQgYNMX3oUaVkRrUMDrMI30ylUo56k_ZTg9SiUFll8pIj0mLXSUfGZGHcQB0dIH8TMNuswh5L9OIeLJUULQrs/s1600/noah+and+bill.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="640" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlLPd2rZc_M1rEf29myt9Xgs3jOT5MOukV2Ntkgvc0Jp2GkCAqEs7EXNdQgYNMX3oUaVkRrUMDrMI30ylUo56k_ZTg9SiUFll8pIj0mLXSUfGZGHcQB0dIH8TMNuswh5L9OIeLJUULQrs/s400/noah+and+bill.JPG" width="400" /></a></div>
<div style="color: black; font-family: Calibri,Helvetica,sans-serif; font-size: 12pt;">
<br /></div>
In Loving Memory of Bill Gilbert - The man who forever touched your life with a miracle.<br />
<br />
Love,
<br />
<img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: none transparent scroll repeat 0% 0%; border-bottom: 0px; border-left: 0px; border-right: 0px; border-top: 0px;" /><br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-53150098863203022982019-02-28T15:38:00.003-08:002019-02-28T16:07:41.323-08:00Make No Mistake the Inner Bitch is Sometimes Dormant, but Never Dead<div style="margin-bottom: 0; margin-top: 0;">
It's
been a long time since my last public blog. Even though I blog a lot
in my head, or on paper, and notes that swirl around in my mind. My
subtle public quietness isn't because there hasn't been anything worthy
of discussing or throwing out there into the world, but more rather
methodical thinking.<br />
<br />
<div style="margin-bottom: 0; margin-top: 0;">
While
lots is new, some things aren't. The same old fighting for your child
with special needs always ongoing. That's never new. In fact, it
often feels so ridiculously old it's like playing the same sad damn song
over and over and over again until you have the words so sickly
memorized in your mind. It's exhausting. Lately, I have found myself
requesting less, pursuing less, asking for less because of the pure
hassle of the battle the ensues when I do. It's comes with such
predictability - one that is never just easy, smooth, or even anything
that makes much sense anymore. Sometimes however, I don't even have to
ask for the fight. Sometimes the fight just lands on my doorstep. </div>
<div style="margin-bottom: 0; margin-top: 0;">
<br />
For
example, Noah had been receiving diaper wipes on a Medicaid Waiver
program called CES (Child Extensive Waiver). It really provides for
many of the things that traditional (EPSDT) Medicaid doesn't cover. Kind
of like a catch all for additional needs, like respite, enhanced
homemaking, adaptive recretational, dance, music, and movement
therapies, medical supplies etc. Noah has been receiving diaper wipes
since around 2014 - so a long while. His CCB (Community Centered Board
who manages his CES Waiver), had been providing them through Amazon
purchases that were just sent directly to the house. About a year or so
ago, they found a vendor to supply them, as a means to reduce costs.
It's always about how much money they can save (and or pocket depending
how you look at the transparency of things). In that short time Noah's
particular brand was being supplied through the vendor, however without
warning the vendor cut off that brand and went to generic or limited
brand supply. The CCB was unsuccessful in finding any other vendor to
supply wipes because they just don't do it. Rather than go back to
ordering through Amazon like they were previously doing, they stopped
his deliveries with the excuse that (ESPDT) traditional Medicaid should
now fund them. Now we all know, in special needs parent land that
Medicaid doesn't supply diaper wipes. Bummer but they just don't. They
supply diapers but not until after the age of 4, with the reasoning
that we should naturally be diapering our children until of natural
potty training age (even if our children have zero hope of ever potty
training). But that's the stupid rational they use for the age
requirement.</div>
<div style="margin-bottom: 0; margin-top: 0;">
<br />
True
to my style, when you piss me off - I will shout it from the roof tops
and I will pretty much involve and include everyone in the circumstances
so that everyone can see the blatantly stupidity of the situation.
It's really been my policy if you don't want the world to know what
you're doing to Noah then you're better off just providing it or I will
make a big scene even if that includes the media, or doing news
interviews. I don't play games, and will broadcast the injustices that
happen to Noah. I have nothing to lose, as the State has already
identified me as a "problem advocate parent" years ago so I already have
that reputation of being a fighter parent.</div>
<div style="margin-bottom: 0; margin-top: 0;">
<br />
So
in this argument of who should continue providing Noah diaper wipes as
he went without an order for months, Directors and Specialists at
Colorado HCPF, passed and exchanged emails back and forth, deferring to
each other for guidance. This was their determination:</div>
<div style="margin-bottom: 0; margin-top: 0;">
<br />
"Department
DME and EPSDT policy staff have confirmed that while wipes are not a
covered benefit under the DME, state plan benefit, they should be
submitted with an EPSDT exception request for all members under age 21.
If the wipes are denied with the EPSDT exception request, they may be
covered under the Specialized Medical Equipment and Supplies (SMES)
beneift available through the member's waiver. Wipes mayt also be
funded under the SMES benefit if the member has a documented provider
access issue by noting which DME suppliers were contacted and their
responses. Either the denial or the access documentation should be
noted in the BUS and kept on the file at the agency in case of an audit,
and it must be updated yearly with the new service plan. This will
help conserve the waiver funds for other services."</div>
<div style="margin-bottom: 0; margin-top: 0;">
<br />
That's
all fine and dandy, however there are no vendors that supply wipes, and
I never ever heard of a family getting an exception granted for diaper
wipes through Medicaid. They just don't supply them and no one at EQ
Health is going to stamp an approval on that. Those fools won't even
approve a new wheelchair for Noah due to growth - as a medical
necessity. Instead their rational is carry him through Target - because
that's so possible to carry a 10 year old child through Target. </div>
<div style="margin-bottom: 0; margin-top: 0;">
<br />
To
add insult to injury, the program administrator for EPSDT in Colorado
for Children, replies that "EPSDT is that best kept secret kinda thing,"
implying that the help is there, we all are just sort of kept in the
dark about it. No fault of their own of course.<br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
So
really the question comes down to, is Noah being singled out?
Perhaps. I haven't heard of any other families having to go to war all
of a sudden over diaper wipes. Certainly he's not the only child
receiving them. Lots are under waivers. Hundreds in fact. How do I
know this? Well I actually manage my own social networking special
needs groups where I advocate and guide other families and there are no
reports of any other families experiencing these same problems at the
moment. In the end, after I included lots of people I know and work
advocating with into these corresponding emails, his CCB has temporarily
yielded and is ordering his wipes once again through Amazon, by way of
his CES Waiver, not traditional Medicaid.</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div style="margin-bottom: 0; margin-top: 0;">
So all you parents out there that don't have your child on a waiver - go
ask for your exception. It's in writing. I have it, I've read it, I
quoted it. Do it. They say that they'll grant exceptions so let's hold
their feet to the fire. Supposedly, the program administrator states
they have even made exceptions to the 4 and under rule for diapers too.
So if you have a 2 or 3 year old and need diapers go ask for that
exception. I want to see them grant it. And if they don't let me
know. Would love to know why since they say an exception will be
granted if you can demonstrate medical necessity. Let's just work this
"best kept secret" to our children's benefit. </div>
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<div style="margin-bottom: 0; margin-top: 0;">
<br />
Once
upon a time (pre-Noah) I wasn't like this. I was quiet, sweet,
non-combative. I hated conflict or fighting. I'd never sass you back.
I'd never raise my voice. But... after Noah totally different ball
game. I have had to learn to embrace that inner Bitch we're all born
with. It's in there. And every mother has it. You never ever want to
mess with an angry mom especially when it comes to something about
providing and helping her child. And even when I decide to take a break
for my own mental health and well being and pick and chose how hard I
want to fight for something, it doesn't mean I'm just going to take it
laying down. I can wake up that inner bitch at any time if I have to
fight for Noah and what he is entitled to. And all you moms out there
who may come across this blog at some point in time. Don't feel guilty
for having to be that way. Your child is depending on it. I have tried
the gather more bees with honey approach. They don't listen to you
that way. These are feral bees. Honey doesn't mean anything to them.
You can't sweeten them up. The nice friendly approach isn't going to
work. You're still going to get a denial and they'll still be laughing
behind a desk at your child's expense. Trust me, I don't relish or
enjoy having to go at people in this way. But, when it comes to your
child, you just can't be meek about them shafting your child. Wake up
that dormant inner bitch - and go get em'.<br />
<br />
Love, </div>
<img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: transparent none repeat scroll 0% 0%; border-color: currentcolor; border-style: none; border-width: 0px;" /><br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.</div>
Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-67959479401963523832018-12-02T11:08:00.001-08:002018-12-02T11:08:56.949-08:00My House of Horrors It was the middle of August, and an ordinary day. Our normal routine,
my mom came over to assist me with respite and help with Noah and I
fetched him his normal Thursday Chick-Fil-A meal. My mom stayed for
lunch with me and the boys and headed home and I
carried on with a load of laundry. <br />
<br />
That's the really strange thing about when tragic things happen. They
come out of nowhere. They catch you on an ordinary day, at an
unexpected time when you are least prepared for it. When you are
comfortable, much too comfortable. The phone rang - my mother
and I figured she was just calling me to tell me that she took a detour
home and found some shopping fun and wanted to tell me about it. But
it wasn't that at all. It was the worst kind of phone call imaginable.<br />
<br />
She's screaming hysterically and my body froze up in defenseless mode,
frightened, and helpless. I can hear EMT workers in the background and
her sobbing that the person who has lovingly filled the father role in
my life for over last twenty years has had
a massive heart attack and was non-responsive. He wasn't breathing,
didn't have any heartbeat and it was ten minutes and counting. I could
hear EMT in the background saying they didn't think he would survive
transport, and I screamed at them not to stop
- not to stop trying. And not to give up on speaker phone. Because
the fight drive in me says you never give up - you just don't. The
little voices in my head kept saying ten minutes... ten minutes is so
long... ten minutes. Noah was thirteen minutes...
look what can happen in thirteen minutes without oxygen or a
heartbeat. But I still said ten minutes I have hope. I can do nothing
for either of them as the fight for life again is seven miles from me
and I can do nothing as I lay crumbled on the carpet
of my bedroom floor crying into the phone with Luke watching on,
terrified of what has his mother so distraught.<br />
<br />
I just kept telling God over and over you can't do this to me right now,
I have no one else. They are all I have the two of them. There is no
other extended family. I can't do this alone yet. I just can't. And
God has to know that. The nightmare was far
from over, but hope came as they were able to recover a heartbeat
during the ambulance ride. Ten minutes. That's all I could think is
ten minutes. What will ten minutes look like if we get to keep him.
Minutes rang out in my head like a ticking bomb -
time never in my favor.<br />
<br />
My mother was transported by a familiar face to the hospital. An EMT
that ironically has come to Noah's rescue when he had a crisis at home.
He was familiar to me and my family, he remembered us, like an angel
God sent to yet another crisis in our lives.
I got word that he was transported to the nearest hospital for
emergency surgery. That hospital was the same hospital that Noah was
born at.<br />
<br />
My house of horrors. And I had no choice but to go back there. It had
been almost a decade since I stepped foot in that hospital. I swore I
would never go back, never. Never back to the place that stole my
child's future from me, nearly killed us both,
and in the process not only robbed him from justice in a court of law,
but then came after us for more than $340,000 in legal fees and
destroyed us financially for us seeking justice for our child. They are
the worst representation of evil to me. A place
full of lies. A place of deception, a place that fabricated and
relished in painting an inaccurate image for a jury to save themselves
at the expense of a child that they hurt. A place that stole every
physical ability from my newborn child, a place of heavy
neglect and zero remorse or accountability.<br />
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I was overwhelmed with fear of not knowing what I was walking into.
Would the news be favorable? Would he make it through surgery? Or was I
waiting for death. The automated doors opened and I paused, the
smells, the sounds, the familiar decor grabbing me
by the throat in an invisible choke hold stealing the breath of my very
existence from my body. But I had to move, I had to go through those
doors. I wanted it to be another nightmare in a long serious I can't
shake, but this was reality. <br />
<br />
I was alone, my boys home with my husband and I had to face this big
monster of a place. I made my way to the second floor to find a
hospital chaplain tending to my distraught mother. I resented them
too. I resented all of them. Even though they were not
players in Noah's tragedy everyone felt like the enemy to me. I wanted
to battle anyone and everyone I seen, overwhelmed with such hurt and
pain. I wanted no one on my side not even a hospital chaplain - not
even the very person designed to offer God's word
in a time of crisis. I wanted no part of it. But here I was
regardless. <br />
<br />
I was instructed to go down and retrieve his belongings and possessions
that they had to take from him during the ambulance ride with the front
desk. I left my mother with the chaplain and found my way back down
stairs, aimlessly I wandered as if I were lost
and had no map even though I knew quite well where to go. I walked up
to the desk, but before I could tell the receptionist what I was there
for, she said "oh honey are you here for the mom and baby class?" It's
on the first floor to the right. And I lost
it... I just died a thousand times inside. Out of all the things she
could have said to me and you had to say "mom and baby." <br />
<br />
I collected myself long enough to simply say I needed clothes from an
ambulance ride. She detected my distress and left her station to
explore my need. Quickly retrieving a bag of shoes. I grasped them
with sweaty palms and resumed my mission of tending
to my mother on the second floor. <br />
<br />
I went into automatic responsibility mode. Calling all the family and
gathering phone numbers. I had to be the the strong one. There was no
other choice. I had to be the roots of the tree in all this. The roots
that the wind could not touch. Unshakable.
I just had to remain unshakable. But instead the pit of my stomach had
dropped, and hope felt like a lingering word I was trying to chase, and
here I was in the place that destroyed my life and my child's life. <br />
<br />
News arrived fairly quickly within the hour, that a stint had been
successfully placed, with a very guarded prognosis due to the missing
minutes of time without a heartbeat and breathing - the only saving
grace in our favor was CPR was administered immediately
- and again I chased hope. We sat for hours without word, the hospital
staff kept politely putting us off when we asked for updates. Never a
good sign. Finally admitting three hours later they were trying to get
an uncontrollable bleeding under control
from his nose and mouth that had no explanation. Like a domino effect,
one problem turns into several in a matter of time. I sat there in a
waiting room full of stunned expressions, motionless bodies, and a
presence of uncertainty for all of us.<br />
<br />
You can never really prepare yourself the visual of someone fighting for
their lives. Ventilators and all the machines administering countless
drugs to stabilize. Nurses in and out. No one can tell you what the
future will look like. Will he recover?
Will he know who I am ever again? Will he ever be like he was prior?
Thousands of little questions run through your mind as you are trying to
get your footing around what is happening. And you can't even breathe
because hospital staff immediately sends caseworkers
to work on last wishes and final directives, questioning you as if
death is imminent. They invade your space like parasites waiting to
just feed on tragedy. Hounding you multiple times if you refuse to
answer their questions. Their timing always less than
favorable. Like they haven't been taught proper etiquette on how to
let someone digest what is before them before being in their face about
last wishes and demanding who has the rights to make end of life
decisions.<br />
<br />
I could feel the hostility within me festering. I kept reciting to
myself, God give me strength for they know not what they do. But wait -
they do know what they do. Yet they continue edging you. My main goal
was to provide for my mother, to feed her, to
take care of her, to make sure she could get through this. I brought
breakfast, made sure I was there before shift changes, texted family
updates, and would go home and then take care of my own family in
between. Each time I had to walk in that hospital my
legs felt weak. The sound of the elevator chime as if someone was
smacking me across the face. Nurses started to detect that I wasn't
keen on a lot of things, and now here I was ten years later with my own
medical degree just to care for Noah - knowing more
than I ever wish I did. Enough to even know that they were
purposefully sedating him unnecessarily because they didn't have the
staff to accommodate trying to ween him from a ventilator on a weekend.
I verbally cornered a nurse on her actions, to her credit
she she didn't dispute it, but there was nothing that could be done.
The following day she offered me yellow socks as a peace offering. I
accepted the gesture. As God would have wished me to. They were
cooling his entire body, just like they did for Noah's
brain cooling to try to minimize brain damage. The cooling process
alone eerily familiar. The same kind of spine tingle you get when
hearing a door that creeks when you open and close it or nails running
down a chalkboard.<br />
<br />
After five days, the ventilator was removed. The moment of only where
time will tell. His first words, "this sucks." Followed by lots of
swear words... encouraging. Except he couldn't remember what year it
was, or days and couldn't tell time. Cognitively
they hand you this paper - explaining brain injuries. Like I was
unfamiliar to it. I know what happens to the brain, I see it in Noah
every single day. I didn't know what to think - how bad will this be?
Things weren't right, that was obvious. But was
it drugs? Or was this the "new" altered person. Seven days and we
were set free - guarded of course, on oxygen and a lot of lifetime
medications. Only time would tell. A relief to have put the actual
house of horrors behind me. But again in a place where
I had to watch the dynamic of a very frightened mother, and play the
wait and see game. Of course with anything there are things that are
never the same - but I would say for the most part God blessed us with
nearly complete restoration. The best I could
have hoped for given where we started.<br />
<br />
Three months later I of course found myself back in the house of horrors
- this time visiting an older brother fighting a complications from
surgery and a ruptured appendix. The same feelings just flooded back.
That hospital that I cannot escape. I don't
think people likely can understand how paralyzing that place is for
me. And what it really does to my entire soul. I could only bring
myself to visit once, relying solely on updates from my mother. Not
because I didn't care, but because I just couldn't
force myself to do it continually, as terrible as that might sound. It
was more about any attempt I could muster at self-preservation because
it was taking it's toll and I could feel it taking over my heart, mind
and spirit.<br />
<br />
I waited a long time to blog - months. In fact I wasn't even sure if I
could share any of this, not because I fear standing in judgment, but
because I wasn't really sure I could ever talk about it. But I think it
needs to be talked about on some level because
I am not alone with having a haunted house. There are millions of
mothers just like me that have to walk into a place or go back to a
place that changed the course of their entire lives even more
devastating when you have to face that they harmed the dearest
most closet thing to your heart in the process. I am not unique. We
pack away these feelings thinking we won't ever have to go there again.
But when you least expect it - you are often forced to go back. And
none of us are alone in having to periodically
face our horror. And that horror will always exist. It will never
ever go away.<br />
<br />
I think the hardest part is now trying to adjust to the unleashed "fear"
so to speak - the reminder of how temporary and how fragile we all
are. Every breathing sound for Noah puts me on edge - likewise I see
the same on guard feelings in my mother's eyes
now too. We are both on fragile ground. Walking uncertainty.
Instinctively this hospital felt like I was walking towards something
that my soul said I should run from. That place that puts you on
caution and high alert. And you wait for the monster who
inevitably is chasing you. The place where you're afraid to relax
because you know the other shoe could drop. <br />
<h1>
<i><span style="font-size: large;"><span style="color: #ea9999;">“There are many ways to be haunted, not all of them supernatural.
From photo album to love letters, the memory of bad choices, broken
promises, lost loves, and scattered dreams can often longer far longer
than the glow if satisfaction from our greatest
accomplishments. Indeed, the most frightening ways to be haunted may be
in the many ways we haunt ourselves.”</span></span></i><i><span style="font-size: large;"><span style="color: #ea9999;"><span style="font-size: xx-small;">― <span>Tonya Hurley,</span></span></span></span></i></h1>
Love, <br />
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<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.
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August always seems to be
transitional. Yearning for the last sounds of the locust before the
leaves fully fall to the ground and as you for wait for the summer
season to be put to sleep. Coming off the heals of a
very painful and emotional August - very much a season in my own life, I
took solace in a Netflix movie; Tully, a story about a struggling
mother. </div>
<div style="margin-bottom: 0; margin-top: 0;">
<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr95AuJyUl-ol1fx_0o9LT9FqwXRaecHNWTmOxVJQJAWZXiMtHc58RVvxzol4HlKHkS2J3SCVhkQf1P6neBO_FiA0sHgGrEGuHRPCuIo6qbNX19C8jHQEWo_Z2xobyWq45g8XVzYesZ7I/s1600/tully.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="1280" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr95AuJyUl-ol1fx_0o9LT9FqwXRaecHNWTmOxVJQJAWZXiMtHc58RVvxzol4HlKHkS2J3SCVhkQf1P6neBO_FiA0sHgGrEGuHRPCuIo6qbNX19C8jHQEWo_Z2xobyWq45g8XVzYesZ7I/s400/tully.jpg" width="400" /></a></div>
<div style="margin-bottom: 0; margin-top: 0;">
It only took minutes for me to
wrap my arms and heart around the main character Marlo. You meet her
with two children and expecting a third. From the beginning it isn't
about this glorious life wrapped up in a perfect
motherly bow. You know the kind of illusion we all paint to make
people think that life is blissful and unblemished with hardships. It
is obvious from the opening scene that her child Jonah has special
needs, as she strokes him gently with a sensory brushing
technique. It was an instant connection for me. I already understood
where we were going from the very beginning - a journey much like my
own, perhaps just on a slightly different level.
</div>
<div style="margin-bottom: 0; margin-top: 0;">
<br /></div>
<div style="margin-bottom: 0; margin-top: 0;">
I absorbed myself into her
feelings, almost as if I could have written it or lived it. I think in a
variation of it, I am still living pieces of Tully's story and perhaps I
always will be. The mistake is the belief
that this is a story about postpartum depression, it's simply not. </div>
<div>
While Marlo did admittedly experience that with her second born Jonah, her third birth isn't really the cause of her struggle.</div>
<div>
</div>
<div>
<span class="st"></span></div>
<div>
<span class="st"></span></div>
<div>
<span class="st"><i></i></span></div>
It's rather a story of versions of yourself and feeling lost in what
once was or what no longer is. There are "before" and "after" periods.
Sometimes there are many "before" and "after" periods of your life.
Not just one defining moment that separates the
two but a collection of many. You still look back while trying to move
forward. Trying to navigate where you came from and where you are
going. It's not easy. Especially when the road ahead is much harder
then what was behind you. Your carefree existence,
lack of worry, minimal problems and then one day you realize you traded
it for sleepless nights, constant tears, challenges beyond anything you
could ever imagine, a host of problems and obstacles. And in the
middle of the multitude of life's hard curve balls
of your current life you still know deep down you are blessed; but even
in that knowledge it does not lesson those overwhelming feelings. You
still ache for thoughts of where you came from, what could have been or
should have been, or what you think you wish
you could change.
<br />
<div style="margin-bottom: 0; margin-top: 0;">
<br /></div>
<div style="margin-bottom: 0; margin-top: 0;">
The premise of Tully is well
crafted. Marlo has a wealthy brother and perfectionist Sister-In-Law
that offers to hire and pay for a night nanny to assist her through the
night with a new baby as a baby shower gift of
sorts. It's blatantly apparent that Marlo feels like she can't quite
measure up or relate to her Brother's wife's ideals or lifestyle and is
hesitant of feeling like she needs to accept that kind of night time
help. She's resistant to the idea, as most supermoms
would be. The idea that we can't be all things to everyone or do all
things somehow seems like admitted defeat. The movie script however
leads us to believe that Marlo does indeed accept this generous offer
and hires the night nanny, who's name is Tully.
</div>
<div style="margin-bottom: 0; margin-top: 0;">
<br /></div>
<div style="margin-bottom: 0; margin-top: 0;">
Tully, this beautiful
lifesaving friend that quickly becomes Marlo's hero diving into rescue
her emotionally, physically, spiritually and soulfully. Tully steps in
to fill all the missing gaps; making perfect cupcakes
because Marlo lacks the energy to be that perfect mom who makes goodies
for school events, cleaning her home when she's too exhausted in the
middle of the night; taking care of things that Marlo lacks the energy
and time to do. Tully rescues her from sleepless
nights with a new baby, she nurtures the broken soul, feeds her
understanding and compassion without judgment and truly understands that
"You can't fix the parts without treating the whole." And that is
exactly what Tully strives to do. Treats all the broken parts as a
whole. Tully is carefree and free-spirited, young in her 26 years
somehow she feels like a reminder of what Marlo has
forgotten. <br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
<br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
Marlo struggles with
coming to grips with the challenges of her life. A child with a severe
sensory processing order is no joke. Her son Jonah keeps getting
defined as "quirkie" without any real diagnosis, but
it's clear that he has unique needs that are not being met or addressed
by his school, and that Marlo is completely unsupported as a parent by
those in her community as the school principle informs her that she
needs to find a PARA aid for her disruptive child
in order to keep him enrolled in school - one of which she is fully
financially responsible for funding and providing to accompany her son
at a school all day. This leads to an eventual explosion of Marlo's
feelings when the principal dismisses her child
from school, with Marlo shouting at the top of her lungs that the world
views her child as "retarded."
<br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
<br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
In that moment I just
cried so hard. Because I can't tell you how often I have felt that
way. That people look at Noah as nothing more than a word. A sad
parent who drew the short stick in life with a child
that is "damaged" and "disrupted." We carry these labels. We all do.
And my label? The struggling mom. I am that mom. Whether you want to
look away and pretend that I'm not. I am. Sure I can present this
picture perfect have the world by the tail and
everything is under control and managed persona just like Marlo. I can
do tap dances with the best of the best. But underneath it all, I am
aching for a Tully. That hero that will step in and fill the voids. And
provide all the answers for all the really
shitty parts that life has to offer. <br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
<br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
While many claim that
this is a movie about mental illness I don't see it that way. While it
is presented in a way that may imply Marlo has lost touch with reality
she hasn't. She recognizes who Tully is, she
knows that. Tully's character was merely a cinematic presentation of
her "before." Not someone that she truly believes existed in present
time. But we're led to believe that is the case because the movie needs
us to in order to fully understand the meaning
and appreciate what Tully truly represents. What if your younger self
could be the one to rescue you?<br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
<br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
Marlo lacks a support
system, she's truly doing it solo. And while she has a great husband
he's oblivious to the extend of her needs and challenges. He's absorbed
in work and in his spare time indulgences in
video games. Leaving Marlo to feel undesired, overworked, and like
maintaining the household and the kids are on her shoulders. Her
husband Drew, however isn't to be hated or disliked. He genuinely does
care about Marlo and his family, he just never fully
seen or understood the level of Marlo's struggle or her needs primarily
because Marlo did a good job of trying to camouflage what was going on
and project that she had everything covered and needed no help. Marlo
wasn't the type of woman to raise the white
flag and surrender. So she invented Tully. A further fabrication in
order to convince her husband she was getting the night support she
needed to continue to be a superhero to her husband, children and
community during the day.
<br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
<br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
Marlo is in this state of
questioning of how she got to this moment in her life. And from
Tully's perspective she's like cool, I have this life and maybe it's
hard but it's incredibly beautiful. She is enamored
with what the future holds, while Marlo feels a sense of being forlorn
and lost. How the two merge into a life's understanding which is really
an expression of profound understanding. Never once is Tully's position
one of disappointment for how her life is
destined to turn out. She's kinda like cool... hey it's messy and
complicated but I'm okay that it turns out that way. Can you imagine if
our younger self gave us such forgiveness and grace and complete
non-judgment for how the ending of our lives turns
out? And never placed blame that things turned out like they did. </div>
<div style="margin-bottom: 0; margin-top: 0;">
<br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
I remember reading
comments on some of these mommy boards on social media when this movie
first came out. Most moms oddly very critical of the movie. They
wanted a happy ending and felt it wasn't. One commented:
<span class=" UFICommentActorAndBody"><span class="UFICommentBody">"Movies
are to entertain, enlighten and inspire. While we may not have ultimate
healing in a particular season in our life, we need to know that it is
achievable. We
don’t go to movies to see complete road blocks."</span></span></div>
<div style="margin-bottom: 0; margin-top: 0;">
<span class=" UFICommentActorAndBody"><span class="UFICommentBody"><br />
</span></span></div>
<div style="margin-bottom: 0; margin-top: 0;">
<span class=" UFICommentActorAndBody"><span class="UFICommentBody">Maybe that's true, maybe primarily people go to movies so they can get caught up in glamorous dramas or movies where it's
all rainbows and unicorns at the end or a fantasy that will never exist.
</span></span>But what if we lost ourselves in
something more real. What if we allowed ourselves to empathize and
relate to a character in such a profound way. I think Tully was so
impactful for me because I feel it's very rare that someone
can identify with my life. And Tully felt like we mutually could
identify with each other. Trying to come to terms with the "before" me
and "after" me of any particular period or time in your life.
<br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
<br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
I know there are lots of
Marlo's out there, I see them in special needs groups all the time. I
recognize their cries for help. I understand their pain. I feel it. I
live it. I know it. And the world too often
turns a blind eye to all of us. They look away if they detect anything
that to them would require them to participate in someone else's life
in any real meaningful way. Which makes self-care even more critically
important. Sometimes when no one is there
you have to be your own hero even if it just means that you rescued
yourself in a hot shower for 20 minutes so you had the strength to keep
going on the rest of the day.
<br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
<br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
The movie ends like it
begins. With Marlo working on her son's sensory challenges and working
on a brushing technique with him. Her own journey and her incredible
love for her children who now are a big part
of her "after." It's not that Marlo's "after" is eternally sad, we
should not look down upon but rather admire her journey for she's found
ways to move forward.
<br />
</div>
<div style="margin-bottom: 0; margin-top: 0;">
<br />
</div>
I think Tully is a must
watch. If you haven't seen it, take it upon yourself to add it to your
Netflix fall line up. Cuddle up in a chair with a hot cup of tea, with
Kleenex in one hand and just absorb it for
what it is.<br />
<br />
Love, <br />
<img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: transparent none repeat scroll 0% 0%; border-color: currentcolor; border-style: none; border-width: 0px;" /><br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-46579663585148851042018-05-12T17:34:00.001-07:002018-05-12T17:34:09.971-07:00Dear Special Needs Mom (On Mother's Day)<div class="intro-paragraph article marginBottom-l">
Dear Special Needs Mom,<br />
<br />
Today I stood and watched you lower a ramp from your vehicle, and get
down on all fours to unlatch safety belts from your child’s
wheelchair. <br />
I noticed when one of the belts snapped your hand causing it to bleed.<br />
You didn’t flinch, nor tend to your wound.<br />
<h3>
Without pause you continued on. You gently rocked the
wheelchair into a safe position to take it down the ramp and out of the
vehicle, mindful of your little one’s arms and legs. </h3>
Raising the ramp with one hand and holding onto the wheelchair with the other.<br />
You walked around to the other side of the car where I watched you
unload the other half of your heart…your youngest child waiting
patiently for you to free him from his seat.<br />
You braced the wheelchair with your leg so it didn’t inadvertently
roll into the street, while lifting your other child out of the
vehicle. <br />
You reached for your purse, one grocery bag, and a bottle of hand sanitizer that you placed in your pocket.<br />
<br />
<span style="line-height: 1.6em;">Holding one hand of one child and
pushing your other son’s wheelchair with the other, I caught you briefly
recognizing your wound, and although I’m sure it was throbbing you
carried on as if nothing had happened. </span><br />
For a moment your eyes caught mine.<br />
My eyes holding back the tears that recognized so much of myself in you. <br />
For I too, am just like you.<br />
<h3>
Temporarily disguised as just a person on the street corner, my special needs life waiting for me at home. </h3>
I wanted to approach you to say hello, but I could see your
determination and focus and knew that I would only serve as a
distraction from your shopping mission. <br />
I wondered what you were rushing into the store get; a carton of
eggs, chocolate pudding for your children, and a specific brand of apple
juice – the only one that your child with special needs would drink –
knowing that your one small bag could only hold a handful of essential
items.<br />
I was walking to my car in awe of another strong mom, when I turned back into the store.<br />
<h3>
A flower display not far from the entrance with a handful delicate
flowers - daisy mix with pink carnations and a single rose caught my
attention.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJX92c1bzX2JT__pjhDXivbJdeR7Jvz5FxZCiyXhfH2ZYC-BcR_tmlVoedzelswVSFGTSKkM6VPQ76hd1FtDgJgnfzrjIwyXCxiyqCBdRMbJ8y7361u2aCiBtaBfEFif9vfaxTk2DqNgM/s1600/flower+bundle.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="437" data-original-width="618" height="282" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJX92c1bzX2JT__pjhDXivbJdeR7Jvz5FxZCiyXhfH2ZYC-BcR_tmlVoedzelswVSFGTSKkM6VPQ76hd1FtDgJgnfzrjIwyXCxiyqCBdRMbJ8y7361u2aCiBtaBfEFif9vfaxTk2DqNgM/s400/flower+bundle.jpg" width="400" /></a></div>
</h3>
A bouquet card lay in the middle.
I made my purchase and quickly filled out the card:<br />
<em>“A Special Needs Mother’s Love is the fuel that enables a normal human being to do the impossible. </em><br />
<em>Happy Mother’s Day,</em><br />
<em>Love a fellow Special Needs Mom”</em><br />
I left the bouquet on the windshield of your car, hoping that it
would bring you sunshine in a day that is often filled with a balance of
difficulties and joy. <br />
<br />
<span style="line-height: 1.6em;">Every now and again sometimes we just
need someone to see us, to know we’re not invisible and we’re not
walking the journey alone.</span><br />
<br />
<span style="line-height: 1.6em;">Love, </span><br />
</div>
<img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: transparent none repeat scroll 0% 0%; border-color: currentcolor; border-style: none; border-width: 0px;" /><br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-15872587791097047642018-05-02T15:23:00.000-07:002018-05-02T15:23:06.182-07:00Special Needs Parenting: I don’t have time if you don't believe in Aliens and Unicorns
<br />
<div class="MsoNormal">
<i>"A friend once said I was delusional and I almost
fell off my unicorn."<br />
<br />
</i>As special needs parents have a profound understanding of reality. We
never underestimate the seriousness of our child's condition nor are we
delusional or in denial about our child's condition or prognosis. We can
fully accept what lies before us and yet know with certainty that there is
always the potential for continued recovery and improvement. We are
a community that often believes in the impossible. Aliens and
Unicorns? Sure. Why not? In our world anything is
possible. <br />
<br />
So why is it so hard for others to support our desires not to shut the door on
the realm of possibilities? <br />
<br />
The main problem being is that many people want special needs parents to take
"Hope" out of the equation. They discourage us from considering
"<i>cures, miracles, recovery</i> or <i>improvement</i>."
And if we stand our ground and shout from the rooftops how we believe in our
child and know they are capable of accomplishing great things eyes roll as if
we've just told them we've shook hands with an alien all the while riding on
our glitter covered unicorn. We are not crazy. We are not
just dreamers. We are balancers of hope, faith and the knowledge that
anything is possible. <br />
<br />
Dismal predictions are a dime a dozen. It’s the theory that you should
prepare yourself for the worst-case scenario at all times and if it turns out
better than you are simply pleasantly surprised.<span style="mso-spacerun: yes;"> </span>If we were to operate under the assumption that this was as good
as things were going to get for our child with special needs, we could never be
the effective cheerleaders that our children need us to be.<span style="mso-spacerun: yes;"> </span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpl-Z0nd8CnyBvCBMVWGEAlXU-j4HurP20KE7ZWgvOuHQR6n9QbWyrZp3PVFHk-5HglPkMheqANbw0ABPi51jPzbbzo2EsCWbYeAdJjSqZ-sJ6tAqgBTariQQOJK-aFUnJrDjvdniX-yg/s1600/ailen.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="846" data-original-width="894" height="377" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpl-Z0nd8CnyBvCBMVWGEAlXU-j4HurP20KE7ZWgvOuHQR6n9QbWyrZp3PVFHk-5HglPkMheqANbw0ABPi51jPzbbzo2EsCWbYeAdJjSqZ-sJ6tAqgBTariQQOJK-aFUnJrDjvdniX-yg/s400/ailen.jpg" width="400" /></a></div>
<div class="MsoNormal">
There is a quote by Cherie Carter-Scott, that I feel defines
the spirit of a special needs parent: </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"> </span><b><span style="font-size: 14.0pt; mso-bidi-font-size: 12.0pt;">“Ordinary people believe
only in the possible.<span style="mso-spacerun: yes;"> </span>Extraordinary
people visualize not what is possible or probable, but rather what is
impossible.<span style="mso-spacerun: yes;"> </span>And by visualizing the
impossible, they begin to see it as possible.”</span></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
By embracing what we are told is impossible for our
children, we begin to see endless possibilities.<span style="mso-spacerun: yes;"> </span>We do not see things how they are now on the special needs
journey, but how they could be at some point down the road.<span style="mso-spacerun: yes;"> </span>It’s okay he’s not walking by age two,
because maybe he will at age, five<span style="mso-spacerun: yes;"> </span>-
seven – ten.<span style="mso-spacerun: yes;"> </span>It’s never out of the question.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We understand that no matter what the probabilities and odds
may be of any accomplishments our children are capable of fulfilling in their
lifetime, that there is the tiniest percentage of chance that things could be
in our child’s favor then that is where our focus remains.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Special needs parents find comfort in the fact that the
unexpected can and does happen </div>
<div class="MsoNormal">
If there is an 80 percent chance that our child may never be
verbal or walk then it is equally 80 percent possible for it to occur.<span style="mso-spacerun: yes;"> </span>If there is the slightest chance, then there
is a possibility.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If we do not believe that our children are capable of great
things, then we will lack the ability to pick up on whatever it is that needs
to be done in order to nudge its occurrence into tangible existence. Literally
anything is possible – including aliens and unicorns. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Love, </div>
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<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-52481452793128894352018-03-05T07:16:00.003-08:002018-03-05T07:18:27.035-08:00The Special Needs Journey: Moving Forward When Others Leave You Behind Special needs parents often report that they have strong feelings of
being left behind. Relationships that once existed prior to their
child with special needs dissolve, friends and family have children
meeting milestones, where theirs does not – they feel stuck watching
life go by for others while life for them stands still. How do you
learn to cope with being left behind?<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPB4zmPmK0UnbGzMkYJJQnl_bR8Bw0gKn456qgvsggmcvGWzTwLOV4Oq9dQ6OrFAtYy3cDJm9P-J2hvDGcKZmGPDOqiettuxWqFwuQ9zJwxTaFgCLDhSmx3RabmP0sQPByfimZpluQ_nE/s1600/keep+moving+forward.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="640" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPB4zmPmK0UnbGzMkYJJQnl_bR8Bw0gKn456qgvsggmcvGWzTwLOV4Oq9dQ6OrFAtYy3cDJm9P-J2hvDGcKZmGPDOqiettuxWqFwuQ9zJwxTaFgCLDhSmx3RabmP0sQPByfimZpluQ_nE/s320/keep+moving+forward.jpg" width="320" /></a></div>
<b>Have A Talk With Yourself: </b><br />
There
is a tendency to feel a sense of not belonging when others leave you
behind. You long to be included and thought of – a phone call - an
invite for coffee – a play date for your child. The absolutely worst
thing you can do is feel sorry for yourself. You need to have that
talk with yourself that says could I really participate even if I was
included? Could my overwhelmed sensory sensitive child even handle a
play date? Would I even be able to get a wheelchair up the fifteen
stairs to my neighbor’s front door? If there are more no’s to all the
questions you are asking yourself – then you are missing nothing except
an extra hassle. Consider that the universe kind of did you a hidden
favor because even if you were included could you really participate?<br />
<br />
<b>Proper Assignment of Forgiveness: </b><br />
Sometimes
it is necessary to absolve people from not fully understanding how them
moving forward without us hurts. Although it doesn’t excuse everyone,
sometimes people simply don’t know how to properly incorporate you into
their lives or activities and in their apprehension make the decision
to put forth no effort at all. Leaving you behind is easier for them,
but harder for you. When we recognize this we have two options: one
being we attempt to initiate contact and put forth all the effort, or
two: let things be and realize that our special needs life simply makes
them too uncomfortable to be a supportive relationship in our life and
let them go.<br />
<br />
<b>Realizing You Deserve Better: </b><br />
It
can be a very emotionally painful experiences when those closest to you –
who you always thought would be there in both good times and in bad
disappear – when you needed them the most. Here you are are; sleep
deprived, your heart torn into a million pieces, a child that you can’t
seem to soothe, doctor’s appointments, specialists, therapists, and then
adaptive equipment, your financial stability takes a dive that you
realize you will never recover from. You realize that you’re no longer
part of the living the perfect fairy tale life club. But rather than
put the blame back on yourself for why others can’t rise to the occasion
and be a good friend or family member – be kind to yourself and
remember you deserve better. You deserve to surround yourself with the
best and strongest support system you can find. And if there are people
who can’t cut it, then don’t chase after them. It’s a blessing in
disguise that they made the decision to leave you behind.<br />
<br />
<b>Don’t Give It Much Thought: </b><br />
Realistically
our days are so busy with the everyday extensive needs and care of our
child with special needs that we really don’t have the extra time to
dwell on the dissolution of relationships. Focus all your positive
energy where it matters – your child. Sometimes that means that you
have to bury the pain and hurt of others leaving you behind just for a
bit. But you have one of the most important jobs ever – and that is the
care of your child who is fully dependent upon you. Think to yourself,
all those who left you behind are missing out on knowing such an
amazing child and family. Their loss, not yours.<br />
<br />
<b>Fill That Lonely Spot </b><br />
We
all crave companionship, friendship, and acceptance by others. We
always want at least one person that we can run to when the chips are
down, and someone who will help celebrate the joys along the way.
Sometimes you can’t replace a relationship – especially when it comes to
family members. But what you can do is fill that void in your life.
Love yourself with the time that you’d invest with others. Take a yoga
class to meet with new moms, search out support groups in the community
with other special needs parents who are experiencing the same left
behind phenomenon that you are, or search out a retreat that you and
your child with special needs can attend that will make you feel a part
of others and the community.<br />
<br />
No matter what just Keep Moving Forward.<br />
<br />
Love, <br />
<img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: none transparent scroll repeat 0% 0%; border-bottom: 0px; border-left: 0px; border-right: 0px; border-top: 0px;" /><br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-67822826447148295222018-02-02T21:07:00.000-08:002018-05-02T15:06:57.256-07:00A Real Life Episode of Black Mirror: Welcome to Electronic Visit Verification for Individuals with Disabilities It is like the science fiction anthology television series called Black
Mirror. A show that targets the unanticipated consequences of new
technologies. It's generally a dark series with disturbing endings.
Except this time it's not science fiction. It's
real. The nightmare is real. A new term that every special needs
parent in this country will come to know called Electronic Visit
Verification (EVV). A new federally mandated computer-based telephone
program that electronically verifies service visits.
<br />
<br />
A law signed by President Obama in December 2016, with the disguise of
bringing new efficiencies, cost savings, and care improvements to
personal care and home healthcare sectors. This law is known as the
21st Century Cures Act (Section 12006) and includes
a wide ranger of measures one of which is the implement of Electronic
Visit Verification (EVV) to manage personal care services to start no
later than January 1, 2019 and all other home healthcare services by
January of 2023. Per Section 12006 (a)(4)(B)
of the Cures Act reduction will not be made to the states that can
demonstrate good faith efforts to comply with the technology and adopt
it or if they encountered "unavoidable delay" with implementing the
system.<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz52yJa7lqw2aSoJFuAfGCJI4wbNN00jaOlacwb7xyLG2aDSW2RPlMtirFcntuzWlOUcGPISC4ZUirc1oM45EusU9ld4p_bZruecZzh3KYwxAnHVKlZC4xH6uFjhuVYoAoI6k8Ug8TygE/s1600/EVV2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="667" data-original-width="1000" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz52yJa7lqw2aSoJFuAfGCJI4wbNN00jaOlacwb7xyLG2aDSW2RPlMtirFcntuzWlOUcGPISC4ZUirc1oM45EusU9ld4p_bZruecZzh3KYwxAnHVKlZC4xH6uFjhuVYoAoI6k8Ug8TygE/s400/EVV2.jpg" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
Any state that is in non-compliance of EVV starting January of 2019,
will lose 1% of Medicaid funding. So States have an incentive to
participate and comply. In the 21st Century Cures Act provides up to 90
percent federal funding for development and implementation
of an EVV system and contract, and up to 75 percent of federal funding
for operation and maintenance of the system and software. Funding is
uniquely available to all states that operate their own EVV system or
have a contractor (i.e. 3rd party businesses
operate the system for them). Colorado has already contracted with
Sandata, an EVV software monitoring agency.
<br />
<br />
So how does EVV work exactly? Now that's the dark Black Mirror plot.
It's a phone device that will have GPS, it also has video and sound
capabilities. It will track care provider time by a "check in" and a
"check out." Your location will be linked to a home caller ID
with a home phone number, and will require Wi-Fi. Your location will
be monitored at all times. It's a good sell. They'll tell you all
this:
<br />
<br />
It's non-invasive <br />
It's not at all an invasion of privacy <br />
It' does not go against HIPAA because it's monitoring all home health care in a home setting
<br />
It will reduce fraud and prevent providers for billing for time they aren't with the client
<br />
It will provide better client care because big brother is watching <br />
It prevents inaccuracy and double billing <br />
It makes sure the care provider is indeed following all stipulated care plans <br />
It gives the State control over overlapping services and unauthorized
services and audits of providers can be conducted remotely via
submission of their original data
<br />
<br />
What they aren't telling you: <br />
It has camera and microphone capabilities on software directly invading
privacy and 4th amendment rights (in many software cases these features
cannot be disabled for care plan visits and logged care, meaning you are
recorded the entire time see a video <a href="https://youtu.be/jvPfZbCQvfo">here</a> for demonstration and
verify-ability <br />
The excessive amount of money invested and cost in implementing EVV. <br />
The NCIL (National Council of Independent Living) is opposed to this as
discriminatory, an undermining of independent living and consumer
direction, and and an invasion of privacy of those with disabilities
receiving in home care and PCA services.
<br />
It is expensive, burdensome and less effective than traditional methods that are currently in place.
<br />
It involves random checks <br />
It will restrict access for those with disabilities in the community since they are being monitored at home via GPS
<br />
This will drive providers to quit who wish to protect their privacy over
providing care to those with disabilities leaving these individuals at a
higher risk for institutionalization rather than being cared for in a
home setting.
<br />
EVV systems put people on house arrest because they are not allowed to leave home as their attendants will not be paid otherwise<br />
It could cause those with disabilities to lose their services if they
are even so much a minute late to be scheduled at home for care<br />
You will be tied to a phone if your battery suddenly dies there is no
back up plan and you will go without documented services and provider
will not be paid and potentially accused of fraud.
<br />
EVV will require voice and speech recognition and if a client has difficulties with speech could also be accused of fraud.
<br />
EVV may impose significant liability on States in the form of
joint employment. For instance in our state many parents are managed by
home health care agencies and our wages are paid through Medicaid to
provide in home care to our own children. The
State may be found to be a joint employer under the FSLA. The new FLSA
companionship rule provides: joint employers are required to pay
overtime to personal care and home health workers. As a result, States
are likely to encounter a significant financial
liability for unpaid overtime costs.<br />
EVV inevitably is going to lead to countless class action lawsuits and violates current laws<br />
Personal data is required to be turned over and managed by 3rd party
agencies on behalf of the State. Meaning your social security number is
handed over, your home phone number is handed over, your personal email
is required, your voice and and in some cases facial recognition
required. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMWXy_BONc1uuPFWlEp1dZL_JFC4YWyAjT-mJqSoWBFFHY7hvXRb9uHx62ODQgtiAt2Y3rQYNUjBADQ0Ss_l7mTMUsdyfwlnF0y8TiHqIbGOV4xvp4ySlGAUsvCpJx9aBK6xSTfggP0mE/s1600/EVV1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="276" data-original-width="650" height="168" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMWXy_BONc1uuPFWlEp1dZL_JFC4YWyAjT-mJqSoWBFFHY7hvXRb9uHx62ODQgtiAt2Y3rQYNUjBADQ0Ss_l7mTMUsdyfwlnF0y8TiHqIbGOV4xvp4ySlGAUsvCpJx9aBK6xSTfggP0mE/s400/EVV1.png" width="400" /></a></div>
EVV stands to violates every "invasion of privacy" category that
exists. Modern Tort Law includes for categories that fall under the
invasion of privacy.
<br />
<div>
<ul>
<li><b>Intrusion of <a href="https://en.wikipedia.org/wiki/Solitude" title="Solitude">
solitude</a></b>: physical or electronic intrusion into one's private quarters</li>
<li><b>Public disclosure of private facts</b>: the dissemination of truthful private information which a reasonable person would find objectionable</li>
<li><b>False light</b>: the publication of facts which place a person in a false light, even though the facts themselves may not be defamatory</li>
<li><b>Appropriation</b>: the unauthorized use of a person's name or likeness to obtain some benefits
<br />
</li>
</ul>
Critical: " Intrusion upon seclusion occurs when a perpetrator
intentionally intrudes, physically, electronically, or otherwise, upon
the private space, solitude, or seclusion of a person, or the private
affairs or concerns of a person, by use of the
perpetrator's physical senses or<b> by electronic device or devices to oversee or overhear the person's private affairs</b>,
or by some other form of investigation, examination, or observation
intrude upon a person's private matters if the intrusion would
be highly offensive to a reasonable person."</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDs9-TwVtMzFEORPrejhefLazFyylJFTCFwqerUyfZEnJjTZNUfZeymRwD5MrZoplrkU9_XaiIwwf_u4hyWkcvy3vEAUFZVI6RM1EGvY4lG0OYQDPhDynOB7h3zV0Gbp4rO2eZuV5NI2U/s1600/evv5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="720" data-original-width="405" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDs9-TwVtMzFEORPrejhefLazFyylJFTCFwqerUyfZEnJjTZNUfZeymRwD5MrZoplrkU9_XaiIwwf_u4hyWkcvy3vEAUFZVI6RM1EGvY4lG0OYQDPhDynOB7h3zV0Gbp4rO2eZuV5NI2U/s400/evv5.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sandata EVV phones one for each child with special needs that resides in the home provided by a family currently using the system. Isn't that crazy - look at that! </td></tr>
</tbody></table>
All of this is going to impact our lives in a great
way since I am Noah's in-home Certified Nursing Assistant and I am
licensed to care for him in home. A program designed and funded by
Medicaid dollars to help keep children like Noah in
a home setting and save the State money from needing to be
institutionalized for daily care. Meaning that I will be housebound, I
will lose all my privacy, Noah will lose his privacy and he deserves
that even if he is disabled, his every move will be tracked
and monitored. All under some really fake umbrella of "reducing
fraud." We are the parents. We are caring for for them on the front
lines, there is no way for us to commit fraud as we're completing these
tasks and reporting them by electronic signature
and can can change nothing once our care plans have been submitted to
the agency for verification of accuracy. Our children would die
otherwise if we weren't providing all the care in these care plans. You
are targeting parents who are on the front lines
with their children and making things a million times more hard and
complicated. You are sending the message that our children need to
monitored and protected against us. You are an uninvited intrusion into
our lives. Our consent was never given, yet our
rights not even considered with the immediate and fast and quiet
implementation that our States are keeping very hush and doing their
best to keep it off our field of vision. <br />
<br />
I'm already participating in an electronic signature of care plans which
is done through a health care agency plan however the terms of what we
are doing now, compared to EVV are very different. We are currently
under a consumer directed plan, and not agency
driven plan like EVV will be. Under a consumer directed plan the
client can go anywhere in the community (i.e. home, employment, to the
grocery store, to get lunch etc.) under an Agency plan it's house arrest
sometimes sprinkled with community approved sites
if you've gotten prior permission. But let's be clear you aren't
likely leaving your home under an agency plan. Under consumer directed
plan for instance a client can be out of the home while a caregiver is
paid to assist with groceries and laundry. You can't
do that if you're under an agency directed plan that has a GPS on your
every blink and requires you to be confined to home for every care plan
and all services. And does the government really need to know the
intimate details of my son's incontinent care
and bathing? Would you like the government to watch you pee or take a
bath? Would that sound appealing to you? Not to mention I homeschool
his little brother - what about his brother's privacy rights? It's not
just Noah in the home. I'm here,
his brother is here, his dad is here. We all have privacy rights too
just because we happen to have a child that is severely disabled does
not mean that any of our rights to privacy are automatically voided.
<br />
<br />
And I meanwhile the real perpetrators of fraud, the very caseworkers,
non-profit community centered boards, CEO's and those managing tax payer
dollars in Medicaid funded programs are dodging public audits to even
show you where the money is all going. In my
state alone, a CCB caught with their hand in the cookie jar, with
personal travel expenses, internet services, and Costco memberships,
just to name a few. You can familiarize yourself with that information
by clicking this <a href="https://www.denvergov.org/content/denvergov/en/denver-auditor/newsroom/2015/audit-reveals-that-rocky-mountain-human-services-spent-public-mo.html">highlighted link</a> and this <a href="https://www.denverpost.com/2016/04/01/families-of-disabled-coloradans-question-overhead-costs-in-benefits/">highlighted link</a>. <br />
<br />
So ask yourself this. Who is really causing fraud to occur. And
who should we really be looking at first? I say we start at the top
and demand a GPS of all caseworkers, what they are doing with their time
get them to report where the money is going
that doesn't come to our kids. Because I'd like to know. Would you
like to know? You should. Your taxes should be going to the right
place and not into the pockets of those managing Medicaid funding. And
if you want to know just how much Colorado is pouring
into EVV rather than putting that towards the care of those with
disabilities you can find that information <a href="https://www.colorado.gov/pacific/sites/default/files/HCPF%2C%20FY19%2C%20R-06%20Electronic%20Visit%20Verification%20Implementation.pdf">here</a>.<br />
<br />
Fingers are certainly being pointed in the wrong direction. Let's put a
GPS on them and confine them in their homes. That sounds just lovely
doesn't it? Turn about should be fair play right? Let's see how this
all feels if the shoe is on the other foot.
And that my friends would be the ultimate plot twist in this real
life Black Mirror episode. Let this GPS surveillance system be
implemented for everyone nationwide and see how everyone likes it and
let any and all content be submitted to the government
to be used however they wish. <br />
<br />
A quote that often comes up in the context of new technology and
concerns about government surveillance is Benjamin Franklin's words:
<i>"Those who would give up essential Liberty, to purchase a little temporary Safety, deserve neither Liberty nor Safety."</i>
<br />
<br />
Love, <br />
<br />
<img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: none transparent scroll repeat 0% 0%; border-bottom: 0px; border-left: 0px; border-right: 0px; border-top: 0px;" /><br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-23128590410938425772018-01-27T19:26:00.000-08:002018-01-28T09:46:38.556-08:00When Disability No Longer Pulls on Heartstrings<div style="margin-bottom: 0; margin-top: 0;">
It's so cliche when they tell
special needs parents that things get easier. That's so much pure
bullshit. That's just fluff to make you feel better in the moment. The
raw and hard truth is that the entire journey is messy, complicated,
and gets harder every single year. Our cortisol
stress levels are variable at best - but it's not smooth sailing when
you get to age five or six or seven. There are lots of elements that
do change however. In the beginning there is generally more support
than you find in later years. I remember back and it felt like I had so
many hands reaching in to rescue me. I had friends once upon a time
that would hold church fundraisers, co-workers who rallied to pay for
the thousands of dollars that it cost for Noah's flight for life bills
to be transported to Children's to try to save his life when our
insurance policy didn't cover it. People fed us, restaurants hosted days to donate, people came to the hospital to visit, to pray, to hold my hand.
Gifts and prayer books poured in and served as comforting reminders that
I'd find my way out of this - as I clung to the hope that my son
wouldn't die. I had people in my corner. Lots of them. Too many to
count. And needed every single one. The truth is I still really do. </div>
<div style="margin-bottom: 0; margin-top: 0;">
<br /></div>
<div style="margin-bottom: 0; margin-top: 0;">
And then things started to
change. The older Noah got people started to realize that all the
support in the world wouldn't "cure" him or make him "better." No
amount of money in the world would fix Noah's catastrophic brain damage. It became
too hard for those closest to me to witness my pain and to see a little
boy in their eyes that struggled physically. People drifted both
casually and quietly. It didn't happen all at once. People disappeared
at their own pace dwindling until the point of there being no one else
left. And with them left all the comforting hugs, the listening ears,
the support and the shoulders I needed to soak with endless tears. I
was now forever alone in all this. And it's been that way ever since. I'll grasp in the dark
here and there for someone only to realize that I'm simply a stepping
stone for them as they fight for their own child with special needs or
until they realize the gravity of my special needs parenting and all that comes along with my life now. </div>
<div style="margin-bottom: 0; margin-top: 0;">
<br /></div>
<div style="margin-bottom: 0; margin-top: 0;">
Help is no longer volunteered
or offered. People will no longer just take it upon themselves to rise
to the occasion and see your struggle. They put blinders on and let you
fend for yourself. Which resulted in me murdering my pride in an ugly
cry in the middle of the kitchen floor and asking and begging for help.
It was brutal and heartbreaking much like a broken child that you know
would never be whole again. That precious Stacy has died a thousand times - all because of the hand she's been dealt time and time again. </div>
<div style="margin-bottom: 0; margin-top: 0;">
<br /></div>
<div style="margin-bottom: 0; margin-top: 0;">
But despite intentionally and brutally killing of pride, the fundraisers and pleas for help
were mildly successful at best, and now that Noah is nine fundraisers
don't amount to any help at all. There are a variety of reasons for
that. Noah is past the baby-stage where his sweet blue eyes tugged on
people's heartstrings. His precious tenderness has grown into a little
boy trapped in a body that doesn't work. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuVz3AjdrrDTYjJeSDTNVUrjBtTL3D95ryJaBawS9KULMO9j6EIPesUx37ACBbB6WBdJ1EwhJ7icEtso0yE0opmcpesZnq9FqAHFSovA6PYxz86xAiiaYn8CGSSeW_WfSaNr4eH6fcSXs6/s1600/heart-strings.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="427" data-original-width="640" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuVz3AjdrrDTYjJeSDTNVUrjBtTL3D95ryJaBawS9KULMO9j6EIPesUx37ACBbB6WBdJ1EwhJ7icEtso0yE0opmcpesZnq9FqAHFSovA6PYxz86xAiiaYn8CGSSeW_WfSaNr4eH6fcSXs6/s400/heart-strings.jpg" width="400" /></a></div>
<div style="margin-bottom: 0; margin-top: 0;">
The most successful fundraisers
and help always comes when you post the tragic reality of our lives. A
picture of our child being rescued by EMT workers; carried off in an
ambulance; or laying helplessly in a hospital bed. In all of Noah's
moments of crisis it's never been on my field of vision to take pictures
of it or document it in that way. The first thing on my mind is always
please God just let him live, not how many pictures can I take with my
cell phone and post it as quickly to social media as possible. I'm just
different in that way - even though I know that is what tugs on
people's heartstrings. I know that pictures speak a thousand words and
that help will go to those who appear to be in a dire situation. But
Noah's situation is dire. It's just how I chose to present that to the
world. </div>
<div style="margin-bottom: 0; margin-top: 0;">
<br /></div>
<div style="margin-bottom: 0; margin-top: 0;">
Noah's needs are no less
because of his age, or because I don't attach a really scary and sad
picture to his fundraisers. No less important because I am more
selective on sharing the harder parts. People see a crystal blued eyed
little boy who looks "typical" in pictures. It is such a misconception
that disability comes with a physical deformity or appearance. That the
severity of Noah's disability must not be that bad if he can smile and
look precious. The reality is that Noah's cerebral palsy is the worst
that it gets. Short of having a trach and a g-tube it can't get much
worse. He will never have any level of independence. He will be
forever dependent on 100 percent care. And a lot of stuff comes along
with that. He needs much more equipment, he needs more supplies, he
needs more support than the child with cerebral palsy that can talk or
self feed, or that is only wheelchair bound or one that just uses a
walker but has all other bodily functions. Noah is like having a nine
year old baby. </div>
<div style="margin-bottom: 0; margin-top: 0;">
<br /></div>
<div style="margin-bottom: 0; margin-top: 0;">
But none of that tugs on
heartstrings. Now that he's older even in public he's just seen as
another wheelchair user. A older boy who is adored and loved beyond
measure by his devoted parents, but one that isn't suffering enough in the eyes of strangers or social media
to warrant any kind of incredible heart to be his hero. </div>
<div style="margin-bottom: 0; margin-top: 0;">
<br /></div>
<div style="margin-bottom: 0; margin-top: 0;">
What about Medicaid and his
Waiver? The ultimate failures in Noah's life right now. I fight so
incredibly hard for him - harder than most are capable of fighting. I
have lost everything so I have nothing else to lose but to claw and
fight back. All of it making made me a very unpopular parent advocate
with the State, I'm highly educated, I know the legal system well - I
have a lot going for me that makes me an intimidating presence for the
State and they strongly dislike that. I'm not an easy push over and I
know rules and regulations and limits all too well. And Noah has paid
the price as they continue to send me a strong message that they will
continue to reverse every favorable appellate Judge ruling in Noah's
favor. It still feels so unreal that they have that legal capability.
How on earth can Medicaid override a Judge's ruling - but they can.
And no one seems to want to change legislation to block them from doing
so. </div>
<div style="margin-bottom: 0; margin-top: 0;">
<br /></div>
<div style="margin-bottom: 0; margin-top: 0;">
So this means that Noah goes
without the simplest of his needs even down to a $50 therapy ball that
was recommended by his treating therapist to the highest of a wheelchair
that fits him correctly. So I'm in a very unique category of
completely alone in this. And no amount of fighting will allow me to
win at it. It's designed and set up for Medicaid to be victorious no
matter what. It's such an incredibly helpless feeling. <span style="background-color: white;">We
are now living with the Internet and a social-media-obsessed culture,
which further adds to those isolating feelings of being disconnected.
People have given themselves permission to be distant because they can
now watch you from the sidelines with ease without being an active
participant in your life. I always compare it to a car crash, where you
slow down to see it but no one gets out to help. You hope in your mind there were no casualties, but lack wanting to get involved to see if you could have resuscitated the injured. <br />
</span></div>
<div style="margin-bottom: 0; margin-top: 0;">
<br /></div>
<div style="margin-bottom: 0; margin-top: 0;">
Special needs parents never get
to unpack their worries, we never get a reprieve from hundreds of
emails and phone calls and mail that pour in weekly related to our
child's extensive needs - which are usually problematic at best. We
have no one to hear us that is present and that kind of social media
expression is met with comments like "suck it up," "aren't you over it
yet," "you're whining," "all you do is complain" - which are of course
responses to make others feel better about their absence in the set of
circumstances, but further adds to the heaviness that you carry in your
heart. </div>
<div style="margin-bottom: 0; margin-top: 0;">
<br /></div>
<div style="margin-bottom: 0; margin-top: 0;">
<span class="x__Tgc x__s8w"><b>“Certain
voices hold this odd pull on our heartstrings. They are like sad oboes
or something, something that makes you want to throw all your money at
the radio while yelling, "I love you." </b> But what happens to those of us who have lost our voice? <br />
</span></div>
<div style="margin-bottom: 0; margin-top: 0;">
<span class="x__Tgc x__s8w"><br />
</span></div>
<span class="x__Tgc x__s8w">Love, </span><img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: none transparent scroll repeat 0% 0%; border-bottom: 0px; border-left: 0px; border-right: 0px; border-top: 0px;" /><br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-83050272208551320382018-01-20T19:44:00.001-08:002018-01-20T19:44:51.461-08:00Division Is Not Acceptance <div style="margin-bottom: 0; margin-top: 0;">
In December we were invited to
an Christmas event. I was overly excited. I planned cute formal
outfits for both boys. I anticipated and was dreaming about the
expressions on their faces; joy, happiness and the awe
of childhood Christmas all wrapped up as if it were a perfect gift with
a sweet little bow. The morning of the event however we were notified
that the event center was no longer going to allow families with
children in wheelchairs to sit all together. We'd
have to be split up. Noah would only be allowed one caregiver to sit
with him in ADA seating - the rest of his family and respite attendant
would have to be seated elsewhere. I was really in shock that an event
center could think that was acceptable. Typical
families are not divided and all sit together. Why not families who
have a child in a wheelchair? A family is a family.
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We inevitably wound up having
to decline the invitation as much as it hurt for me to do that. Noah is
a all hands on deck kind of kid and more hands the better when it comes
to an unexpected crisis or sensory processing
episode. Splitting up isn't an option for us. Not to mention I would
never be able to see the joy in Noah's face or hear the laughter in his
voice, or his expressions or be present in that moment with him. I
would be cheated out of all of that leaving
him behind to sit with only his dad while I am divided from them, not
to mention risking his safety if only one person was with him. I
marinated in sadness and regret and the realization that this world
wants to make very little efforts in including us in the ways we need to
be included.
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Today is the International Day of Acceptance (January 20th). The goal
<span>to embrace diversity, educate your community, and empower each
other. It's so hard to embrace diversity. It's an uphill battle every
single day. Being different isn't good. Being different gets you
separated as a family. Educating your community?
Doubtful. In the minds of others they think they are doing an
excellent job of being mindful of ADA rights, and they pat themselves on
the back for supporting certain members of the community - perhaps
those with disabilities and illnesses that don't require
the use of a wheelchair - yet we're still not all on equal footing.
Certain conditions or diagnoses are more favored in the community than
others.
In a world that penalizes you if you have a child in a wheelchair - a
community that makes you feel "less than." </span></div>
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<span>I thought perhaps this
was a fluke. That perhaps one venue had incredibly unfair rules and
expectations for wheelchair families. But that appears not to be the
case. Families report to me that this is happening
universally with movie theaters, sporting events, concert venues, and
performing arts. That across the board event centers are hiding behind
this excuse they don't have enough wheelchair seating to allow families
to sit together - when really it should be
like any other event. When seating is sold out it's sold out, rather
than making the policy to split up families. Division is not
Acceptance.
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<span><br />
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<div style="margin-bottom: 0; margin-top: 0;">
<span>Acceptance is the
recognition that families are deserving of staying and being together
just like typical families. Making a policy that prohibits an entire
family from sitting together is unconscionable. So, today on the Day of
International Acceptance ask yourself this question: What are you
really doing to make sure that you are fully accepting and embracing the
disability community and their family as a whole? </span></div>
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<span>Love, </span></div>
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<span><br />
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<span></span><img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: none transparent scroll repeat 0% 0%; border-bottom: 0px; border-left: 0px; border-right: 0px; border-top: 0px;" /><br />
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<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-34907797809518338022018-01-20T11:24:00.000-08:002018-01-20T12:18:42.878-08:00An Ocean of Dreams: SeaWorld San Antonio Because of Noah's tremendous physical challenges he requires extra
attention and care. Sometimes that is a really hard thing to balance
the unique needs of each child. I often feel like I'm living in two
different worlds; a special needs world and a typical world. Caught
between the best of both beautiful worlds. Luke, however at his tender
age often feels a bit jealous to the attention that Noah often receives
throughout the day, and he craves sometimes just a cuddle when I'm spoon
feeding his older brother. The guilt is real and it's big. Because
you're trying to split yourself into two halves to accommodate and
balance the needs of both children. <br />
<br />
When Brave Young Hearts set up Noah's adventure trip, we never
expected that they'd gift Luke with his own special day as well to
SeaWorld. Luke has had a rather strong love for ocean life - and in
particular Orca Whales. The child eats, sleeps and breathes anything
orca whale related. So SeaWorld was a really big deal to Luke and the
entire family. Brave Young Hearts even coordinated a Dine with Shamu
event for us and even went out of their way to contact the chef directly
to coordinate arrangements to have a meal pureed for Noah at the park.
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To watch the light in Luke's eyes as soon as he hit the parking lot
made me teary - because I knew he was experiencing his own dreams. In a
way your dreams have to die when you have a child with special needs
but you never want those dreams to die for either of your children.
Their happiness regardless of the challenging circumstances continue to
be on the foremost of your mind and heart. I never want Luke to feel
cheated by the family dynamic that he was born into or to feel secondary
to what is happening around him.<br />
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Luke very well could live at SeaWorld. He was so at home there. A
place that speaks his language. Dining with Shamu was the most amazing
experience. The trainers were so hands-on and it was such an up-close
and personal experience. They talked with Noah (knowing he couldn't
talk back and Noah spoke the best he could with his laughs, squeals and
bright blue eyes). And Luke was so super quiet. He just listened and
absorbed it all like a sponge. The chef pureed a dish of mac and cheese
and chicken for Noah and they went out of their way to have a slice of
cheesecake on hand just for him. I cannot tell you how overwhelming it
is to have strangers go out of their way to help you and make
accommodations and fulfill usual requests so that you can be included
like the rest of the world. Brave Young Hearts made it all so perfect.
Every detail, every little single magical moment. They looked out for
us in all the ways that I wish the everyone would.<br />
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The trainers must have felt our tremendous awe of the experience and
quietly invited us down to the tank for a private meet and greet with
the Orca Whales. It was a surreal moment to be that close to them.
Only glass separate you from them. Their eyes spoke volumes of
understanding and tenderness. One of the largest species on earth
dubbed a killer whale - yet they felt so majestic and loving in that
moment. We were able to get some pictures up against the tank with
three of them - the mother and two of her babies. A big thank you to
Doug, the trainer at SeaWorld (While I know this blog is far from
timely) I hope you find your way back to Noah's blog to know how much
you gifted both of my boys that day. And you deserve such mention for
your kindness that day. I won't forget you. I never forget anyone that
touches our journey in such a special way. Thank you for all the
memories and the smiles that we'll treasure a lifetime.<br />
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SeaWorld is rather big, and we must have walked it three or four
times that day back and forth between events and exhibits. We were
unable to see the dolphin exhibit that day. It was closed for weekend
maintenance, but we were able to see a couple of them swimming out in
the open which was still neat. Noah loved all the shows, he beamed with
laughter and smiles. Luke was in his element - so much so that we
worry that Luke is going to grow up and find a place to live near the
ocean... he's very passionate about sea life.<br />
<br />
<span style="font-size: large;"><span style="color: #45818e;"><b><i>"<span class="st" data-hveid="45" data-ved="0ahUKEwjr-7fsoefYAhUE2mMKHWsxDIYQ4EUILTAA">You
can't cross the sea merely by standing and staring at the water. The
sea, once it casts its spell, holds one in its net of wonder forever."</span></i></b></span></span><br />
<br />
Love,<br />
<br />
<img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: transparent none repeat scroll 0% 0%; border-color: currentcolor; border-style: none; border-width: 0px;" /><br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-20721694504571205252017-10-10T16:31:00.003-07:002017-10-10T18:07:11.977-07:00Morgan's Inspiration Island Water Park: A Special Needs Utopia <div>
Morgan's Inspiration Island is the world's very first fully
accessible water park had it's grand opening this year on June 17th.
Never in my wildest dreams did I ever think that Noah would be blessed
with the opportunity to visit it, much less on opening
season. We learned of a local organization who grants children
adventure trips through Noah's participation with HopeKids called Brave
Young Hearts. I sat on the idea for weeks before applying and delayed a couple weeks more, before
actually submitting the required
application for consideration. I think I've grown too accustomed to
bad news and the word no, and continual rejection in any form is
painful. But Papa Bear, one of the board of directors of Brave Young Hearts, was persistent and kept encouraging me to apply regardless
of the all the reasons I could think of that Noah would likely be
rejected. A long shot I thought - Noah's wish to travel out of state
to San Antonio, Texas to experience for the first time in his life a
water park that was designed to be fully accessible for children
just like him. </div>
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And to our complete surprise and extreme delight Noah was chosen
for an adventure trip. I think I had re-read the email about six or
seven times before I really could believe it. Then I said don't get your
hopes up because what if there are strings attached
like you've got to pay airline fees, or hotel room or provide for
things like our own food allowance or rental car - none of which we
could do. Yet, Brave Young Hearts set all our concerns at ease
immediately taking care of every single detail of Noah's trip
from big to small. We were in just awe of this incredible and
unexpected blessing to come Noah's way.
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The timing was divine in it's own way. It's been a hard year,
financially, emotionally and medically as we've fought our way through a
lot this year. I would be lying if I said it didn't take it's toll on
the entire family in some way. Our reserves
were low. Nothing about our lives feels remotely normal. And here
Noah was given a chance to experience being normal - in a world designed
around his needs and not the other way around.
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Noah's trip was planned for the very last weekend the water park
was open for the season. And we counted down the days as if we were
waiting on Christmas. Luke even more excited as Brave Young Hearts is
such an incredibly loving organization that they
went out of their way to include Noah's little brother Luke in this
adventure trip and blessed Luke with a day at SeaWorld. Which is huge
in Luke's world. Since around the age of three, Luke has had a rather
unique obsession with ocean life - an in particular
orca whales. Brave Young Hearts coordinated lunch with Shamu and a day
at the park. A dream come true for both children - a parent's dream to
see both of their children incredibly happy at the same time.
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We hopped a plane (after TSA issues that are always present when we
fly with Noah), said a little prayer that his wheelchair would survive
the trip, and a leap of faith that all would be beyond incredible once
we landed in Texas. Our first night was a
little rocky. Noah always gags and vomits on take offs and landings,
however he vomited a bit more than usual on this trip. No one really
knows why. Noah's severe sensory processing disorder can be very
unpredictable at times. He never fully recovered
from his SPD episode on the plane and wound up gagging and throwing up
into the late hours in Texas, going though the only 2 sheets I packed
for his special needs travel bed, three showers and 2 pajamas later.
We weren't concerned with Noah being sick -
we knew this was sensory related, but nonetheless overwhelming for him
and for us. Chris and I starred at each other dazed and tired both
hoping that Noah would rebound to normal to enjoy Morgan's Inspiration
Island the next day.
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We had a late start - sleeping in until 9:30am and missing
breakfast. But we got our engines running and Noah was full of smiles
by the next morning. He had settled into a level of comfort and was
ready to explore the day and we were relieved that his
SPD episode seamed to be over. We hopped into the rental van (which
was perfect for Noah's needs and felt like this travel security blanket
while we were away from home), and headed out for a day of fun at
Morgan's Wonderland and Morgan's Inspiration Island.
</div>
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We were drawn to the accessible ferris wheel. I've never seen
anything like it before anywhere. Little bell shaped cabins with an
accessible option to tie down Noah's wheelchair so he could enjoy the
ride. It was really windy so the cabin bells swayed
quite a bit which can cause a bit of motion sickness... although Noah
seemed to breeze through that more than the rest of the family did. But
he enjoys motion in a different way than the rest of us do. It was
neat to be able to do that with Noah - something
that we can't do anywhere else in the world. We rode the accessible go
carts, played at a bit at the sensory village before we headed over to
Inspiration Island which opened an hour later than the rest of the
park. </div>
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When you walk into Inspiration Island you are greeted with an
attendant that assists you with your water park needs. For Noah that
meant he needed to be fitted with a waterproof wheelchair for the park.
Our attendant was Louisa and she was exceptional.
She looked over Noah and immediately knew his needs and what he would
need for positioning and what size wheelchair he would need. Let me
tell you all that Noah's DME (Durable Medical Equipment Provider) still
can't do this. And Louisa - bless her heart
- is simply amazing. She is gifted and she cares. She does her job so
well. Too well as I wanted to pack her up and bring her home. The
girl knows her equipment and what children like Noah need. </div>
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Within minutes she had picked out the right sized Convaid
Waterproof wheelchair for Noah, fitted him with beaded head support and
the right sized harness. She also knew that Noah would need hip
positioning and had a small wedge pillow but then went even
further as she didn't want him sticking to the plastic so she lined it
with a piece of neoprene fabric. She had covered every single important
detail. Louisa was pure gold.
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The changing stations are magnificent. There are several of them
with large barn doors, with enough room to accommodate an entire family
with all the changing table accommodations one could ever dream and hope
for. Some rooms had ceiling lifts, some
had fixed tables, some had power tables that lowered and raised. If
you had an ADA need it was all there. They even have air powered
waterproof power wheelchairs - and those are so cool. I mean super
cool. Whoever dreamed that up deserves a high five and
a fist bump. </div>
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We hadn't had lunch so decided to have lunch at the park. There
are actually two restaurants at Inspiration Island but only one was open
since it was the closing weekend for the park. They had a great
variety to chose from, typical amusement park food,
but fun for the entire family. The benches were all accessible and in
the shade. After we had a bite to eat it was then time to get our feet
wet - literally. </div>
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Noah had never seen a water park before, and never had been
splashed by water or or near fountains in his life. So it was a
completely new experience for him. The first time he felt the water
from a small fountain he laughed and instantly understood
water equals fun. Happy squeals and infectious laughter followed and
my heart just swelled. Thank goodness it was a water park because my
eyes swelled with happy tears (and certainly I didn't want the rest of
the world to notice). These are the kinds of
experiences everyone dreams about when you have a child like Noah. A
parent like me literally lives for our child's happiness. Noah is
forced to enjoy the world around him differently because of his physical
limitations but at Inspiration Island nothing
is out of reach for him. Nothing. He can do every single activity
there with ease.</div>
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<div>
We decided to do the water ride before the remainder of the water
park. The water ride is so cool. It is fully accessible too with a hydraulic
ride that raises and lowers Noah's wheelchair so he can ride in the
back with us in the front as the lazy river
ride passes by fun animals, music and sound. It was relaxing and
wonderful and Noah loved it. We only rode it once due to time, and I
wish we had been able to ride it several more times. I really loved
it.
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<div>
Most of the water park is not heated. Only one attraction of the
park is heated. But, we did all the non-heated areas first and the
water was comfortable - likely due to the hot temperatures in San
Antonio. But the entire family was comfortable with
the water temperature. We splashed, we played we ran around. Luke got
attached to a very small water slide and playfully engaged with other
little kids just like him. Everything you could ever wish for is at
Inspiration Island - comfortable cabanas, an
abundance of lawn chairs, multiple accessible bathrooms, incredible
changing rooms, waterproof wheelchairs both manual and power - loving
attendants, great food - loads of smiles from all families there. It's
like special needs utopia. There is not a single
thing that they could have done any better. </div>
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<div>
I wish so badly that we could find a way to give this experience to
Noah yearly. It is something I really think that children like Noah
really need in their lives. It is such a magical place and children
like him are so deserving of this happiness.
They have to go through so much - too much. And we all should strive
for this pure joy that exists at Morgan's. I wish a place like Morgan's
existed in every state. It's so needed. Morgan's is a living dream.
We stayed until they closed which was 4pm.
We didn't want to leave. We spent the last few minutes at the heated
section of the park. Oddly enough Noah couldn't get his body to go from
non-heated to heated. You would think it would be the other way
around. But since we experienced the heated park
last his body actually shivered in the heated section. We've always
known that Noah can't regulate body temperature but it was curious to us
that his body actually shivered in the warm water and no where else -
almost as if his body was confused going from
non-heated to heated. The opposite of how the rest of us would react.
We decided it was probably best to bundle him up and dry him off
although he certainly didn't want to leave and started to give us the
pouty lip. Which of course breaks your heart every
time knowing that his fun has come to an end and that I can't bring him
back the next day, or next week or even likely next year no matter how
hard I wish for it. </div>
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<div>
Brave Young Hearts provided Noah with such an incredible blessing
and we are so grateful for the love and kindness that they gave not just
to Noah but the entire family. Out of a place of great pain with the
loss of their own child, they are providing
so many beautiful memories and experiences to others so that they joy
they are missing can live on for others. There are sometimes not enough
words to ever express a proper thank you for the magnitude of it all.
</div>
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<br /></div>
<div>
Morgan's Inspiration Island is a place you must visit. You won't be disappointed. It is pure perfection.
</div>
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<br /></div>
<div>
Love,<br />
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<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-3820447467785324842017-09-27T21:33:00.001-07:002017-09-28T08:27:02.518-07:00The Tiny Terrorist: How TSA Keeps You Protected Against Wheelchair Bound ChildrenLast week traveled for Noah's adventure trip sponsored by a local
organization called Brave Young Hearts. Noah's adventure was to
Morgan's Island Adventure Water Park in San Antonio, Texas. Noah was
also gifted with a day at Seaworld with his little brother
Luke. The first hurdle of course - and the one we most dread when
traveling with Noah was the airport. This time we decided to take our
own vehicle and leave it in the airport parking garage. That turned out
to be an excellent decision and way more convenient
than attempting to wait on an accessible taxi or get Super Shuttle to
coordinate a ride. We were waiting sometimes hours for a ride home -
even after scheduling and pre-paying for ride service when we travel.
And although the price tag was $96, it still
was less than half of what we normally have to pay not including tip to
coordinate an accessible ride to and from the airport.
<br />
<br />
Yet, even with the convenience of parking on site, we knew it would
still be a challenge with the number of bags it takes to travel with and
getting through TSA. We did certainly underestimate the hassle of TSA
this time. We measured it up against past experiences
which were certainly problematic at times, but we still weren't
prepared for for what was in store for us on this trip. I call TSA
Cares religiously when we travel, and give them the same speech each
time; medically fragile child, traveling with medically necessary
needs like liquids and pureed foods and often medications, has spastic
quadriplegia cerebral palsy, cannot be transferred out of his wheelchair
at TSA check points, etc. I even get an a TSA attendant call upon arrival and departure confirming my contact with
TSA Cares and their acknowledgement of our travel plans. <br />
<br />
We have now flown with Noah a total of twelve times. Each time we
travel we always have a unique set of challenges and obstacles.
Sometimes it's the rental car agency who failed to realize we were
serious when we said we really need a wheelchair ramp accessible
vehicle and no a regular van doesn't work to tie down his wheelchair.
Sometimes our hotel room isn't accessible, sometimes we forgot something
Noah needed at home and we're shopping immediately for it when we land,
and sometimes it comes in the form of being
bullied by TSA. <br />
<br />
Two flights ago TSA demanded Noah be removed and separated from his
wheelchair. I was threatened with arrest if I failed to comply. They
took Noah's three ounce apple juice away from him that he was drinking
in order to settle and minimize his sensory gag
and vomit reflex. Once removed, Noah immediately vomited all over me
and himself. An older gentleman behind us was also removed from his
wheelchair and TSA refused to give it back to him despite desperate
pleas from his family. TSA refused to check him
until they were finished with Noah and the detained him for an hour.
With no real reason to do so other than they could. I went to change a
vomit soaked Noah while he was still in his wheelchair, his daddy
briefly running to the restroom to wash his vomit soaked hands. Chris
comes out of the bathroom and asks where Luke is and I say holding onto
the back of the wheelchair. Except I look up and he isn't. I scream
Luke's name. And nothing. We're frantic not knowing where he went.
Within seconds Luke calmly marches out of the women's bathroom saying he
had to go pee. And I'm like is this really my life? As I'm trying so
hard to care for one child and nearly lose the other at an airport. <br />
<br />
I of course came home, immediately filed a complaint, video recordings
of Noah's TSA check were reviewed and we were issued a written
formal apology with the "well do better next time" verbiage. Basically
an acknowledgement of they did wrong but didn't care much about that
fact.
<br />
<br />
Although we've had some bad experiences with TSA I still wasn't
prepared for what happened on this trip. Per usual, Chris and I removed
our shoes as required by those under the age of 18. Noah does not
travel with shoes, Luke kept his on. All of our baggage
was screened including Noah's medical bag which is clearly marked
"medical." It contains his food pouches - typically six of them to get
us by until I can get to the ones that I bag check, 2 apple juice boxes,
his medical cup, plastic spoons, topical medications,
Motionease, diapers, wipes, and facial towels, antibacterial wipes and
gels, and a vomit bag kits. The other bag carries Noah's Ipad, the
camera, my driver's license, keys, antibacterial, changes of clothes for
Noah as he soils them quickly and requires multiple
changes when traveling, 2 chux, and charging cables or the cell
phones. Luke had a carry on bag with nothing but his clothing.
Everything else was checked baggage.
<br />
<br />
TSA always gets edgy as they immediately try to separate Noah from me
at the scanner. I tell them I have to go through the scanner first and
then Chris will push the wheelchair through so that one parent is
always with him. They start to always get confrontational
with me because I refuse to be separated from Noah even briefly. Noah
is so involved that it only takes a second for him to aspirate if you
don't know how to handle the situation. I'm ushered over to a place
where they swab down and pat down every piece
of Noah's wheelchair, which makes him uneasy as he can't handle
strangers too close to him. I warn them he'll throw up if they don't
give him space. They swab his hands both of which I have to lift up for
them because he cannot voluntarily raise his arms.
This time Noah tests positive for explosives. This is the fourth time
he has tested positive for explosives in all the times we have flown.
All other times Noah 's pat down of his wheelchair suffices and we're
let through.
<br />
<br />
However, this time a supervisor determines that because Noah tested
positive for explosives that it is mandatory that I undergo a full body
search since I was the last parent to touch his wheelchair. Only Noah's
hand tested positive not the wheelchair.
I'm given no other alternative. I am asked if I'd like a private room
for what they are re going to do and I decline as they tell me it would
require me being separated from Noah and the rest of my family. I'm
ordered to spread my legs and hold out my arms.
I'm instructed to lift my shirt and allow the TSA agent to go
underneath and between both breasts twice. Two hands run the length of
the insides of both legs, while an open hand rested on my inside of my
crotch and wasn't at all brief. Part of me is in disbelief
this is happening all because I have a child in a wheelchair, I feel
numb, helpless and slightly embarrassed that I'm being required and
subjected to this invasive search. The TSA agent is unsatisfied and asks
me to unbutton my pants and pull them down hip
level exposing the top portion of my panties and then combs through my
hair, then my neck and down my back, I feel two thumbs down the center of my bottom spreading both sides apart, with hands moving down the front of my underwear while the TSA agent checks me once more from head to toe as I'm ordered to spread my legs wider and keep my palms facing upwards.
It wasn't so much the modesty part that was difficult, but the
awkwardness and uncomfortability of having to consent to having a
stranger touch you in this vulnerable way. We are forced to give up our
basic freedoms and being forced to subject to this process. I can tell
you that what happened to me was far beyond a basic search that I was
intentionally touched in a way that I shouldn't have been all disguised
in the name of "security." <br />
<br />
My full body search isn't enough to satisfy TSA, however. They then
indicate that Noah testing positive for explosives would then further
require a separate swab of everything in our bags. Everything was
dumped out in trays. The camera was removed from it's case,
Noah's sterilized medical cups and spoons each dumped out voiding them
from being sanitary, clean and ready for use, Noah's baby food pouches
were opened and tested making them unusable. IPads separated and given
to different TSA agents. All of our belongings
spread out to no less than seven agents while we stand there stunned.
Noah's car seat was tested for explosives not once but twice even though
the first set of swabs did not come up positive. Luke looking on for
reassurance that everything was going to be
okay as he sensed our distress. Noah's gagging growing stronger
indicating he couldn't hold off his vomiting much longer. We're
finally released and cleared 48 minutes later. Other passengers looking
on at us throughout the ordeal as they went through their own TSA
checks I'm sure wondering what all the fuss was about and why so many
agents were devoting so much effort to this tiny terrorist in a
wheelchair and harassing his family. <br />
<br />
TSA still
unsatisfied requires an escort attendant to our gate, as if we are still
guilty of an offense. We make it to pre-boarding ontime. I am still
stunned and struggling to absorb what I just endured. I just want the
TSA agent to go away. He asks if I had any feedback for their
services. I think my response was "are you kidding me?" I lacked the
words, they were there hot and heavy under my tongue but my voice
squished out of me like a child who had been punished and sent to sit in
a corner in silence. I didn't think I could have a conversation
without breaking down in frustrated tears. The TSA agent was extremely
young and sensed the anger and sadness in my body language and
retreated. <br />
<br />
I called my mom, the only person on
this earth that knows me well enough to feel my troubles in my voice.
It's comforting to talk to her about it before I quickly board the plane
and she understands that I'd do anything for Noah - even subject myself
to a full body search in public. <br />
<br />
I tried to put
it out of my mind the entire flight, but my mind just kept dwelling on
it - as if I could somehow have changed it or influenced that outcome
what occurred. I was heated because I felt the process of TSA to be so
incredibly unfair. A real terrorist has a better chance of getting past
TSA than a child in a wheelchair does. Only certain individuals have
to remove shoes. One can even pay $85 per person for a five year "pass"
or what is referred to as a TSA PreCheck, to get around having to take
your shoes off, remove your laptop or be subjected to a liquids check.
That seems like a small price to pay for a real terrorist to get around
any invasive TSA check - heck there is no swabbing even necessary of
your hands for an able bodied person. But Noah who can't even hold an
object in his hands, who can't sit, walk, talk, crawl or self feed could
be a danger to those flying and TSA thinks that you need to be
protected against families like ours.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNrYewprwO1m8dT0wsqLlwfGbXe2t94NDFMFc8wrZwQfFaDxExZwxckaAfyM_JT0DxQ1kd32NZWIN1EezPbpjgzdmb9YyLza8lfajd2nM0hiH1dGPr-zp7iud3Js7VjPUdWHu_vrxqKNYS/s1600/fly+with+dignity.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="800" data-original-width="524" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNrYewprwO1m8dT0wsqLlwfGbXe2t94NDFMFc8wrZwQfFaDxExZwxckaAfyM_JT0DxQ1kd32NZWIN1EezPbpjgzdmb9YyLza8lfajd2nM0hiH1dGPr-zp7iud3Js7VjPUdWHu_vrxqKNYS/s400/fly+with+dignity.jpg" width="261" /></a></div>
I put it
out of my mind the best I could for the remainder of the trip, I didn't
want it to overshadow the incredible fun and joy that we all were gifted
with experiencing. I had to build memories with my children because at
the end of it, that's all we'll have left and can take with us in this
life. I thought perhaps we had been through the worst of it. But that
wasn't the case. <br />
<br />
Upon getting ready to come home
Noah's hands were once again swabbed. He did not test positive this
time for explosives. His wheelchair was also swabbed and patted down
twice, it also came up negative for explosives. Chris gets pulled aside
and told that Noah's pureed baby food is flagged and that if we want to
be able to take it the plane with us even though it is medically
required that I have to be subjected to another full body search. Chris
sees the tears well up in my eyes and gruffly says no to the attendant
and says if there is a full body check required then they'll have to do
it to him. I feel a sense of relief, but just as sad for Chris as I was
for myself. I tell the TSA agent that we've never had to do full body
searches because of Noah's food before or because he's tested positive
for explosives in the past, and her response was short and curt and said
these have always been the rules even though I know that isn't the
case. And my suspicions were correct as I came home to read an article
about <a href="http://www.theblaze.com/news/2017/03/06/tsa-searches-are-about-to-get-a-lot-more-personal-and-invasive/">TSA's new invasive full body searches.</a><br />
<br />
Chris's crotch was simply grazed and a full open
and resting hand wasn't required as it was for me. They are quicker and
less through with him. They seem uninterested and slightly less
interested in him since he volunteered and demanded to take my place.
Chris stoically handles the situation and makes eye contact with me to
reassure me that we'll get through all of this together - Noah's team.
You can't break us no matter what you put us through.<br />
<br />
I
think the worst of it is over. I'm relieved and anxious to get as far
away from TSA that I can. The plane was running ten minutes late and
still unboarding previous passengers from another flight when we got to
the gate. A heavy-set lady in a wheelchair waits as if she's stalking
the gate for first signs of boarding. The Southwest gate attendants
look to us as they recognize our needs deserve first priority and
attention. We're allowed to board first as we always are, so that we
can install Noah's special needs car seat and then transfer him from the
wheelchair onto the plane. While we try to do it quickly it does take
us a few minutes. The plane isn't full. 40 seats exactly remained
unassigned and empty on the flight. Noah has to sit against the window
per regulations with his car seat, his dad next to him. The medical bag
next to Chris. Luke and I are a row across leaving the end seat isle
open on both sides of us. <br />
<br />
The lady in the
wheelchair follows behind us and is visibly angry. She blurts loudly
out of her mouth "well I guess I'm screwed with not getting a front row
seat." She then briefly pauses and looks over at Noah and proceeds to
say ""oh it's because we have a retard on the plane." Do to her
size she requires two seats and there is only one on each side of us. <br />
<br />
I
wish I could tell you that each time someone says something like this
that I could be rock solid like stone. But, I'm not. I wound easily
even though I hide it. Her words feel like a dozen swords hitting my
chest. I well up with tears out of a combination of all the feelings
I'm experiencing. While the anger rises to a place where I want to tell
her just how incredible that miracle child is that just boarded the
plane, I can tell by her demeanor and loud and obnoxious behavior that
me uttering even one word to her would have caused a massive argument
and fight that would have likely gotten one or both of us kicked off
that plane. I sit down in silence. Stewing in pain and holding it all
in. I focus on how pretty the night flight is and all the lights below
us as we fly. I kept thinking and wishing and quietly asking God for
just an ounce of comfort to get me through it. I contemplated in my
head giving this lady a piece of my mind when we landed. I may have
even followed through except we were rushed rather quickly off the plane
since the Southwest plane before us had a brace for impact landing
crisis and emergency vehicles were everywhere around us. I just wanted
to get Noah off the plane and my focus quickly shifted from that
verbally uttered sentence of cruelty onto Noah's well-being and cleaning
him from the vomit that always happens upon landing. <br />
<br />
We
were on the ground and home and we had endured and overcome the hard
parts. That's really what we have to focus on is that we don't let the
hard times overshadow all the good, incredible and beautiful moments.<br />
<br />
For
all of you special needs families that have been faced with similar TSA
experiences or sadly will have to undergo something like this in the
future all because you have a child in a wheelchair who is medically
fragile, my heart goes out to you. I understand. And I know how unfair
this all is. I wish I could change it for me and for you. I dream of
things being easier for us, I wish that having a child with special
needs didn't always feel like there were consequences attached to it. I only see TSA's practices getting worse, and all the parents who reached out to me when I shared my most recent experience - I'm just so sorry. This is so wrong and my heart aches for all of us. <br />
<br />
Love,<br />
<img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: transparent none repeat scroll 0% 0%; border-color: currentcolor; border-style: none; border-width: 0px;" /><br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.comtag:blogger.com,1999:blog-5667727518498026444.post-31283968808546059412017-09-11T10:06:00.000-07:002017-09-11T10:10:27.207-07:00You Couldn't Have Known <div dir="ltr" id="divRplyFwdMsg">
You couldn't have known the multitude
of challenges I faced in that single day; entire family Medicaid renewal
forms, SSI disability verification forms, a letter saying that
something negative was reported on our credit report and endless emails
regarding
my son's affairs.<br />
<br />
You couldn't have known that I was running on less than three hours sleep while tending to Noah's various difficulties in the night and how exhausted I was regardless of the numerous cups of coffee that I had. </div>
<br />
You couldn't have known that I received a phone call from Noah's
attorney that day confirming that he received my first legal payment in
order to sue Medicaid for continuing to deny my son his medical needs
regardless of an Administrative Law Judge ordering
them to reverse their denials, and the State continuing not to yield to
those orders but instead file Exceptions to initial Decisions to void
any favorable ruling on Noah's behalf.
<br />
<br />
You couldn't have known that our account had been compromised for the
fourth time in six months, which left us temporarily without a positive
balance in our bank account and without debit cards until new ones
could be ordered. And that we're still trying
to rebuild our credit after bankruptcy, leaving us dependent on our
bank account.
<br />
<br />
You couldn't have known that I spent a large portion of the day
evaluating my parenting performance to two differently able bodied yet
equally beautiful children.
<br />
<br />
You couldn't have known that Noah's nutritional order came incomplete
with a note that stated his supplies were on backorder for an
undetermined about of time.
<br />
<br />
You couldn't have known that I was kicking myself for not buying
groceries early in the week before our account was breached leaving us
without adequate dinner options.<br />
<br />
You couldn't have known that I was heavy-hearted about having to use
the cash that I received as a result of selling things around the house
to help Noah with his out of pocket medical and equipment costs and
needs for dinner that night.
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5NjtLIB2U4NLA6FNOgzdCRnMdwWJL-vZBmw7xLe-Tfl5P-i-bWB91VZqZoaYfVhd4ntmWqPjJzts-h3GvVE63OobYxUcKcBf6Op3hZEqvk8ISRn9YMjG4H3RXk3ffaxKdMsDGnHJRej5r/s1600/red+robin.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="450" data-original-width="617" height="291" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5NjtLIB2U4NLA6FNOgzdCRnMdwWJL-vZBmw7xLe-Tfl5P-i-bWB91VZqZoaYfVhd4ntmWqPjJzts-h3GvVE63OobYxUcKcBf6Op3hZEqvk8ISRn9YMjG4H3RXk3ffaxKdMsDGnHJRej5r/s400/red+robin.jpg" width="400" /></a></div>
You couldn't have known that I was frustrated that the only four
disabled parking spots were full and two of the cars didn't have
handicapped plates or a placard and were parked illegally, leaving me to
having to take up two regular parking spaces in order
to get Noah out of the van. <br />
<br />
You couldn't have known that awkward feeling when we entered the
restaurant and the wait staff struggled to find a place to seat us for
dinner as we watched several other parties be seated before us while we
patiently waited for an option.
<br />
<br />
You couldn't have known how we frequently feel invisible and how we are merely an inconvenience to everyone.
<br />
<br />
You couldn't have known how terrible I felt when the only table
option there was required your entire large party to rearrange
yourselves and fold down the leaflet of your table so that Noah wouldn't
swing and hit his arms at dinner while he was sandwiched
between our two tables. <br />
<br />
You couldn't have known how I was dwelling on the fact that our
seating arrangement impacted you in some way and how sad I felt because
nothing about our existence feels normal.
<br />
<br />
You couldn't have known that I took notice of one of the children at
your table - a little girl so tiny and sweet who watched so lovingly as
Noah's daddy fed him. And I thought to myself that her loving and
tender expressions meant that she was destined
to do incredible things in her lifetime with the kindness she was born
with. <br />
<br />
You couldn't have known that my hamburger was the first meal I had
eaten that day and that I was so incredibly hungry that we decided to
splurge on a $7 appetizer even though we thought twice about it.
<br />
<br />
You couldn't have known how happy Noah was with his seating position
and being able to have a large big screen TV in front of him so that he
could watch a football game at dinner.
<br />
<br />
You couldn't have known that I admired your large dinner party and
convinced myself that all of you were this incredibly close family that
would always be there for each other and how I wished we had that.
<br />
<br />
You couldn't have known how important it was for me to thank you for
being accommodating and kind and not overly upset that you had to
arrange your table and move it to make room for Noah when you got up to
leave. And how you put my soul at ease when you
told me no thanks was necessary and that you thought we were great
parents. <br />
<br />
You couldn't have known that I cried when the waitress came over to
our table after you all left to tell us that you had paid for our dinner
and didn't want us to know until you had left.
<br />
<br />
You couldn't have known that you were the only person who has ever
done that for us and how incredibly touched we were that someone cared
about us in this beautiful way.
<br />
<br />
You couldn't have known that you made us feel loved and cared about
even though we were strangers, and that in so many ways you were an
answer to our prayers after a long and hard day.
<br />
<br />
You couldn't have known the difference that you made. <br />
<br />
Love, <br />
<br />
<img src="http://signatures.mylivesignature.com/54489/154/799C8EE14276E65AB01BFD7658F14B84.png" style="background: transparent none repeat scroll 0% 0%; border-color: currentcolor; border-style: none; border-width: 0px;" /><br />
<br />
<br />
<span dc="http://purl.org/dc/elements/1.1/" href="http://purl.org/dc/dcmitype/Text" property="dc:title" rel="dc:type">Noah's Miracle</span> by <a cc="http://creativecommons.org/ns#" href="http://www.noahsmiracle.blogspot.com/" property="cc:attributionName" rel="cc:attributionURL">Stacy Warden </a>is licensed under a <a href="http://creativecommons.org/licenses/by-nc-nd/3.0/us/" rel="license">Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License</a>.Noah's Miraclehttp://www.blogger.com/profile/10441238011792232764noreply@blogger.com