It feels like I've perpetually
not been able to catch my breath. There is a new challenge before me
everyday relating to Noah for nearly the past seven years and
circumstances often beyond our control associated with special needs
parenting. The wave of problems and complications seem endless. Just
as I do my best to resolve one problem only to have another one hits me
with blunt force. You'd think by now that I wouldn't lose my footing,
that I'd be solid as a rock against these forceful waves, but I'm not.
With each passing storm I feel more worn and weary than I was the time
before. I ache for a break in the clouds but it never comes. The
phone calls keep coming, the emails, the SSI overpayments, SSI cutting
Noah's monthly amounts, Medicaid denials, DMO problems, CES Waiver
problems, therapies that we can't financially keep up with, Noah's
Service Dog was diagnosed with terminal cancer... and then a whole
collection of miscellaneous messes associated with special needs
parenting that I purposely don't discuss so I don't have to stand in
judgment of other people's opinions and criticism. (Because society has
yet to learn that art of never kicking a person when they are already
down).
Chin up, I tell myself. As I choke back the tears.
Special needs parenting involves so much more than just caring for your child with special needs. I don't ever get a chance to be storm free. A new one is always on the horizon.
There
are some things I have to close the chapter on because I can do no
more. I've exhausted all efforts in all directions. After we received
the news about Noah's second service dog's terminal diagnosis, we just
felt that we couldn't do this again a third time. Three years and seven
months later, and still no promised dog for Noah. His first dog
failing the program, the second gets cancer - and we've invested
emotions and hopes both times. How many times can one watch a dream
die? And I could be doing this circle for many more years without any
real sense of the end goal in sight. I have to let it go. I tried, it
didn't work, not because I didn't want it to, not because we didn't try with all our might to make it happen...
Noah and his 1st Service Dog, Samson
Echo, Noah's 2nd Service Dog Diagnosed with Terminal Cancer
I'm mad about SSI denying my
appeal and request for waiver. It's hopeless to fight a system that you
cannot win. Contacted a recommended disability advocate twice by phone
and email; no response. No one really probably wants to touch this. A
prior attorney I had to pay a $2,000 retainer to fight a $9,000
overpayment. Now we are in a position where there is no money for an
attorney - there is nothing, but me to fight the best I can on my own -
and clearly I'm usually on the losing side of things. And SSI just to
play with me cut Noah's funding this month by $400. Swell. Perfect
timing too with end of month bills. And it's not like SSI really gives
you their plan of attack. They never really tell you when they are
going to short you, or what your monthly will be. They send you these
fake little estimates in the mail that are never real... you can't count
on anything they send you - unless it's an overpayment threat.
CES
- oh God what a can of worms that all is. I've unearthed more problems
than I never imagined. I'm sure that they kind of wish I'd just go
away with all that I've stirred up. There is so much to it, I don't
even know if most families really even know or have any clue what is
going on behind their backs. I can guarantee you the general public doesn't.
Then there is me that questions everything and has discovered some big
wool is being pulled over lots of eyes. I don't even know what will
become of it all. But I do wish everyone knew what was going on.
My days are filled with fighting all these
storms and then I have all these other opportunities that I'm endlessly
chasing to help Noah; getting him back in good health after his lungs
caught a bacterial bug, finding new holistic approaches to his diet,
trying to fundraise for equipment he's outgrown that we cannot afford to
replace - posting his outgrown equipment for sale - only to get beat up
for trying to sell it (as the special needs community treats it like
a crime if you try to sell something you paid out of pocket for) A
phenomenon to guilt you into giving it up for free. One could give away
or donate nine items free of charge and attach a price tag to the tenth
item - and still be a bad person in everyone's eyes. There is a no-win
situation there.
And there's even so much more besides all this going on....
I go to sleep and wake up and do it all over again. I am trying hard not to let my struggles become my identity.
Adversity Can Be Our Greatest Motivation for Spiritual Growth or our Deadliest Means of Discouragement.
My twentieth high school reunion is in
one month. I itched to get out of high school, an educational
institution that I felt held me back from all the amazing things that I
was destined to do in life. I wanted to be set free to pursue them.
Chase them, catch them with a net and feel that incredible sense of
accomplishment. Funny yearbook predictions; most likely to succeed,
most liberal, most conservative, most artistic. You didn't find my
picture next to any of them. Which in hindsight was probably accurate.
After all is there is no prediction for most likely to grow up and have
a severely disabled child, altering any dreams or goals you ever once
thought of having. After some consideration, I decided that introducing
Noah to people I went to high school with at a family event likely
wouldn't be his cup of tea. So, I'm skipping it. Although, sometimes I
do have a tad bit of curiosity of how those I once knew would think of
the hand that life dealt me. I'm sure stacked up against "most likely
to succeed," one just can't compete.
Since Noah's birth
though I've found a way of growing new dreams and goals for him and for
others. I've realized that my destiny has become something so much
greater than I ever imagined it to be. I'm satisfied and content
knowing that I'm making a difference in Noah's life and in the lives of
others. I no longer grieve the dreams that died and that I was forced
to bury. New ones have sprouted in their place. I've learned great
lessons. I've been to places in my life others could never imagine.
Deep, dark, sad places of great despair and indescribable pain, but I've
also risen to experience profound joy and understanding of what really
matters while we have this short time here in life. I've found my
footing and also experienced the blessing of a child's life that most
could never grasp or understand with parenting a child that relies upon
you for complete care. I don't want to squander my time. I want to
leave my positive footprint.
Some who meet me for the first
time I think are pleasantly surprised that after knowing our story -
all of it... that I still find a way to smile, and that I haven't rolled
over and just died from all the continual hardship and complications
that continue to come my way. I am rolling with the punches and finding
ways of punching back. Fighting fair with the truth, and always
pursuing justice, equality and fairness. Sure I lose my fair share of
special needs battles, but I have a decent cry and pick myself up again
and keep marching forward. Because I know that positive footprint is
incredibly important. And that Noah depends on me, just like others
have grown to depend upon me for advice, comfort and understanding. A
safe umbrella gathering the walking wounded beneath my own broken wings
vowing to do my personal best to do my part to make things better for
the disabled community.
I'm not quite sure to the extent my
footprint will look yet, but I know my efforts are leading me there.
Maybe it's going to be in the form of advocating for others and helping
them fight an incredibly challenging and at time unfair system. That
I'll help be the driving force behind big changes that will benefit the
disabled community. Creating new laws that are going to make life
easier for the disabled community. Maybe it will be in helping
cultivate ideas and products that will make all the difference to
children and families, maybe it will be in just touching a handful of
lives through writing blogs about our own special needs journey. Or
something simple like touching the life of others at the holidays.. or
if I'm really lucky maybe all of it.
I am sure not lacking in
challenging experiences to help me gain knowledge in areas I never
wanted. My current battles of trying to get the State to realize that
asking me for a check to pay for services that they are supposed to be
providing to my child is blowing my mind with their justification for
why they feel I need to bring a check to the table for my child's
sensory clothing, and an equipment vendor who thinks it is a brilliant
idea to propose that fixing a broken wheelchair by leaving a child
without one for an unspecified amount of time (without any kind of
temporary replacement) isn't a realistic proposal. Just drop it off
they say. And that means that he lays draped across my legs while we
drive home all considering that his transit ready wheelchair is his ONLY
means of transportation? And then I carry him through Target, and the
grocery store and to and from all therapies? Makes you wonder how
these people maintain jobs that require them assisting the disabled
community. They simply have no clue. I wish I could school them. But
I've come to realize that I think the light bulb would only go off if
you have a child like Noah. There's no other way you'd really
understand how unrealistic some of these things are unless you're living
it. In their minds it makes perfect sense, in my mind these proposals
are an utter joke. And SSI the icing on the cake because things have
to happen in 3's... has denied both my appeal and my waiver request for
the most recent overpayment request. With what they feel is their
"logical reasoning."
They apply three tests when they decide if you are at fault causing
an overpayment. The first is whether you made an incorrect statement or
a statement in which you should have known was correct, the second is
whether you failed to give us timely information which you knew or
should have known was important, and third is whether you accepted
payments which you either knew or could have been expected to know were
incorrect.
Claimant is able to pay the overpayment back.
Therefore based on the facts we have, we cannot waive the collection of
this overpayment. Which means you must pay this money back. It
certainly makes no difference to them that I fax in monthly pay stubs
and additionally send a hard copy in the mail certified so I have a
signed signature as proof that they've received it timely (because that
still let's them off the hook not to do proper calculations and then
blame you for the reason they suck at math). And assume that we all can
pay it back even though we can prove that we can't. Filling out
appeals and waiver forms is really a true waste of time. They've
already made the determination you can't change their minds even when
you shove the truth and facts under their noses. They will forever and
always be a flawless system, and there is nothing at all stopping them
from coming after you at any given moment. Because they can. There is
nothing stopping them. You could shove all the proof in the world under
their noses, indisputable proof that you are right and they are wrong.
Doesn't matter. Lost cause. And it's not just us, it's thousands of
people. You post about a SSI overpayments anywhere on social media and
you're going to hear a multitude of some really tragic stories and
circumstances. If the government gives it to you - even if it's their
ERROR they screwed up they shouldn't be able to come back and ever say
you have to repay it. Until we FORCE them to be accurate and held
accountable for the job they are doing then this mess is going to go on
until the end of time. It's rarely the fault of a special needs family
as we're so fearful of overpayments we do everything in our power to
report wages immediately.
I still have hopes that I can build a
bridge however, and get them to cross that bridge with me. (I know they
say dreamers are crazy). And maybe I am. Maybe there is no way to
change things for the better, but I'm sure going to try. Then I wake up
each day and look at my little boy on the floor and say until my dying
breath I fought for you. There has to be a way to get these government
agencies on board with making things better for struggling special
needs families. I'm not going to give up on that hope anyway. I've
coordinated a meeting with the State in July. I'm praying for change.
I'm gathering moms and dads, to pack along with me. Many of whom I've
never met, with the hope of demonstrating that there are many families
experiencing difficulties with utilizing government assistance and
accessing resources that were designed to help their child.... because
in the end it's all about positive footprints.
The sacrifices of Special Needs Dad isn’t always seen. It’s the stillness of a stoic heart as he sits in an
armchair listening to each breath his child takes on a baby monitor. He
encompasses courage that camouflages fear, uncertainty, and exhaustion.
Forced to re-design hopes and dreams that once existed and transforming
them into new dreams for his child. A Special Needs Father’s actions
become a language of love. Protection and devotion beyond all measure.
He stands as tall as the strongest tree facing the worst windstorm,
allowing all family members to seek shelter in his strong branches.
Walking with undiminished integrity. He sees no burdens in specialized
care, or understanding that he may be diapering his child into adult
years, or communicating only through smiles and subtle verbal sounds.
A father that takes on understanding that his child is perfect,
unique and incredible – a life’s blessing even when society may only see
the imperfections of a child that they cannot label “normal” or
“typical.” Faithfulness, hope and devotion running through his veins
like the fluid keeping him on his feet. Incredible beyond all measure,
with a greatness that often is under-appreciated and goes quietly
unnoticed like the calm of gentle ripples on a river. A father who is so
grateful for the blessing and gift of his child’s life he celebrates
each moment he has. A special bond between a father a
child with special needs – surviving and thriving together.
He puts all needs before his own – a commitment and expression of
great love. A sturdy frame able to carry a child unable to walk,
patience to embrace a child that needed endless cuddles to soothe and
understanding when proper distance and space was necessary to assist
with sensory challenges are all qualities that come naturally and
without a given thought. A father that has endless endurance to push
heavy wheelchairs up hills, and down mountainsides so his child can
enjoy a gentle breeze and feel the whispers of nature. Purposeful
intention to create adventure and playful spirit into the life of his
child with special needs, with the goal of making life feel fun and
normal.
Adoring eyes that offer reassurance that he will always be there,
through all the joys, pains and challenges that life has to offer. An
unwavering promise that he’ll hold his child’s hand through all of it
and that they’ll be this incredible team. A father who rises up to any
challenge without complaint in order to make his child feel like all the
best things in this world are within reach.
He craves no recognition or attention for his loving ways and
incredible parental care. Instead his reward comes from knowing the
enormous impact he has on a life often so fragile and delicate that it
needs extra tenderness to grow and thrive. He has an unspoken
understanding that the role he plays in the life of his child with
special needs and knows that he has profound perspective on what truly
matters in life. His love knows no limits, no bounds, no end.
Thank you for being the greatest gift to a child with special needs.
Happy Father’s Day.
This first appeared as a guest blog I had written for Easystand for Father's Day 2015.
Today, Chris, Noah & Luke enjoyed the day in the comforts of our own home. Enjoying laughter and love on a beautifully sunny day. The three of them sitting on a bench together. I watched from the kitchen window admiring the beauty of the gift they all are to each other. Ending their day together by sharing in a favorite treat of ice cream cake.
When you become a special needs parent, so much changes. There are days
when you literally ache to feel and be like other parents. Do all the
normal things that everyone else gets to experience with their
children. You watch on the sidelines as things pass you and your child
by. Sometimes to push away the sadness you'll even go as far as to
convince yourself that you are better off without those experiences.
And maybe - just maybe you are better off - but then you start to think
about your children how much better off are they? Never to get an
invite? Never to feel included? Wanted? Thought of....
For all
of Noah's life we've quietly celebrated birthdays and special events
from the comfort of our own home, with only our own family. Special,
yes. But sometimes you always wonder what life is like on the other
side of birthday invitations, party favors and lots of other children
singing Happy Birthday. Because of the nature of Noah's disabilities
he's rarely invited to parties. We attended our one and only birthday
party three years ago.
There
hasn't been any invites since. And because of Noah's significant
sensory issues I knew that we'd never be able to host a birthday party
for Noah or even for Luke for that matter at our own home as Noah would
see it as an invasion of his personal space and just throw up the entire
time. I almost hung up my hat to the idea that a party of any nature
would be in my children's future. But I seen a flyer one day when I was
taking Luke to swim class. My fingers reluctantly picked it up, in my
imagining the fun Noah and Luke would have. But, the price tag for a
pool party still a bit beyond reach. I almost left it behind but
figured I'd take it home and stew on it.
It sat on the counter
for days. I came up with a million reasons why not; who would even
come? I put out a general feeler with a friend we had recently met,
Lindsey, the CEO of ez-pz, knowing she had three beautiful little boys
to see if she'd be interested in attending if I was able to fundraise
for the fee to rent out the pool for a party. Little did I know that
my inquiry for an invite would lead to this amazing gift of her hosting a
party for Noah and Luke. Luke's birthday is in April and Noah's in
December - but she wanted to give them the gift and experience of what a
birthday party was like.
Feeling like a child in a candy
store, everything was so full of excitement. I hadn't coordinated a
party since before Noah's birth, and while a tremendous amount of work, I
enjoyed hosting house parties and entertaining. I felt that spark
ignite. That flame that you thought died out but didn't realize was
just burning low. I found a handful of friends to invite for the boys,
mostly those who have walked into our lives for special reasons; to help
Noah with therapy; former neighbors that shared the same special needs
journey, a very special photographer that took foundation pictures of
Noah when Luke was only 3 months old, and the ez-pz team and staff.
It lasted
two hours, but felt like it went by as fast as a flash of light... a
true sign that you wish the moment would last forever. Lots of fun in
the water, splashing, swimming, parents and children.... my normal.
Something I had longed to be able to give the boys for a long time.
Another dream come true. We had three lifeguards, two that work each
with Noah and Luke so they were familiar faces, and it was so wonderful
to have them at the party. They made it feel complete, as I've grown
rather attached to them. They may not really know it, but they feel a
bit like family. I cling to those that care like a life-line that
prevents me from sinking. Caring hearts sometimes feel extinct, so when
I find them I never want to let them go.
We had an amazing
attendance, all but one was able to make it. You always wonder how will
it go. But it couldn't have been any better. Everyone was happy and
enjoying themselves. We had light snacks, chips, fruit and veggies,
with lemonade. Tablecloths that we had held onto way before Noah was
even born finally got to see the light of day. Luke and Noah came home
with some new treasures, but most importantly a pocketful of memories
that they'll remember for a lifetime.
I sat and opened the
collection of cards for the boys. I'm not even sure how ez-pz did it.
Twenty-eight cards! All filled with incredibly heartfelt loving
birthday wishes and messages. Thank you to everyone who made this day
possible. Ez-pz is more than just a company with a fantastic product.
They are making a difference in so many lives and I will always be
forever thankful for the difference they made in Noah and Luke's life.
A first party... when life is sweet soak it in.
If you can't try to find humor in things on the special need journey I
think we'd all lose our minds, and never recover. Have you seen Shia
LaBeouf's unusual motivational speech? If you haven't I suggest you
check it it out. I have to laugh because I kind of feel that way about
government services. JUST DO IT! Just approve what Noah needs and
spare me the brain damage and JUST DO IT! Can you see me delivering
this kind of motivational speech in my living room of our house after I
get denial after denial?... I imagine myself sometimes acting out like
Shia having his moment of motivational aggression.... or however you'd
describe it.
I'm so over being jacked around and playing games to
obtain government assistance that is designed to assist Noah and
children like him.
A stair lift victory finally came my way.
I'm celebrating - kind of. I mean I am genuinely relieved it was
approved as that is one rather significant hurdle down. And the really
funny part is I have to pay out of pocket $30 for it. Because well -
it's just too easy for the State to fund all of it. So I'll fork out
$30 - whatever. But there are so many other things yet unresolved and
in the pot so to speak. And in some way it's kind of a bit of a game
changer for the rest of the year's benefits - especially since they took
some of Noah's benefits this year away to fund things that should have
gone on last year's benefits. And I can kind of anticipate the next
play: "We denied the pillowcases because we weren't sure about funding
due to the stair lift." Even though the pillowcase decision had no
bearing on a pending decision on a stair lift. But will now be used as
an after-thought defense.
And then I received this lengthy
email that really talked in circles that just contributed to my
agitation and rather diminished any feeling of victory that I was
feeling over the stair lift about Noah's sensory clothing request.
Apparently, the hold up on there decision making process is that they
are attempting shopping comparisons and researching what they feel is
the "typical" out of pocket yearly costs that parents spend per child on
clothing. According to the state the average household spends between
$800-$1500 per child a year in clothing. I have no idea where they
pulled those figures from, if you do any type of internet search you're
going to find pages fulls of variables and thoughts on annual figures of
clothing per child. These variables depend on if we're talking about a
single family, divorced families, families on limited income, families
who have children with special needs. What is typical? Who do we
define typical these days? Are the Kardashians typical? Are we typical
because our "typical" child's clothing costs $3.88 at Walmart and I'm
lucky if I can score him $50 worth per year new? Then not only did they
suggest that Noah's clothing costs fall under "typical" parenting
financial responsibilities and are not above and beyond what a "typical"
family would pay. (I don't know any typical family who has a child's
12 pack of socks cost $75.... unless again we're talking about the
Kardashians...)
But they decided to provide me with a comparison
chart of what Noah's sensory clothing requests would look like up
against apparel from Kohl's and Target, for what they feel are similar
in nature. First neither of those stores carry sensory clothing so
we're comparing apples to oranges. A graphic T-shirt at Target is NOT
the same as a graphic print in sensory clothing made from Bamboo
fibers. Not the same. You touch it and know it's not the same. The
prices tags of course won't be the same either.
Their comparison chart did nothing but get under my skin.
“Okay,
I researched most of my research on Target and the Sherpa hoodie at
Kohl’s site; Target didn’t carry the same type of item.
T-Shirts, one polo and 5 graphic pullover short
sleeved shirts
6 sensory shirts requested, average cost $25.58; Average typical cost of comparable item; average 10$ each.
Solid shorts,
5 sensory shorts requested, average cost $26.60 each; average cost of comparable item; 12-14$; $13
Long sleeve shirts;
5 sensory shirts requested, average cost $28.20; average cost of comparable item; $14-17; $15
Cargo pants; fleece type
4 sensory pants requested $43.50 average cost; average cost of comparable item, 17$
Long pants, stretch/sport
3 sensory requested, $30.60 average; average cost of comparable item $12
Hoodie, sensory Sherpa lined, $46, 1 requested;
average cost of comparable item $33
Front Zip Hoodie; jersey
1 sensory requested, $38; average cost comparable item $22
Coverall one piece PJ type;
3 sensory type requested, $33.66 average cost; average comparable cost $9
PJ Set 2 piece
2 sensory type requested, $39 average cost; average comparable cost $16
Seamless sensory socks, 12 pair 75$; comparable
price $7 per 6 pack; $14 for 12.”
The
original email was really unclear about their intentions are of
reaching a decision on this medically necessary request that a doctor
signed! After continual requests for clarification it seems that the
sensory request may be approved (with an unspecified amount), the really
unusual request is the State would like me to send them a check for the
"difference" for typical clothing. Which seems so backwards to me.
Here are Noah's benefits designed to financially assist him, but wait
let's ask for a check from the family to pay for what they deem the
family's portion of "typical clothing costs." I think it makes way more
sense for them to determine an allotted amount dedicated to sensory
clothing and then send us a gift card to each sensory clothing
distributor so that we can make purchases on Noah's behalf. I proposed
that would make more sense than actually having a mailing county
services a check. Here's your child's government funding, but wait you
send us money instead!
I
also have some big concerns about Noah's accounting of CES funds.
There seems to be some big discrepancies between my records and theirs.
They claim to have paid out hundreds more for a bathroom modification
than they told me was approved, they claim they've paid out more respite
care hours than they actually have according to W-2 statements and
records of hours, therapist payments are inconsistent, they say they
gave Noah a communication app gift card for an amount that was higher
than what he actually got and saying that Noah's home modification costs
were higher than they were. And I keep thinking if they were a bank I
would have fired them and closed my account! So their explanation is that they are assessing: the overhead fee that FRE program charges for doing business. And
that they can take 3.5 percent for their fees in addition to any
services paid on Noah's behalf. So let me get this right, Noah gets 36K
yearly minus 3.5 percent that the State wants to pay themselves with...
and keep in mind Noah doesn't even necessarily get to access or utilize
that entire 36K, with denials, and the State gets to keep whatever they
don't allow him access to each year because they funding doesn't roll
over from one year to the next.
And
why does this all matter? Because in my mind it's a form of fraud.
Where is the money actually going if it's being reported incorrectly and
not going to the children it's designed to help? And there are so many
parents in my situation that don't question the accounting reports -
they assume they are correct. We are so overwhelmed that many parents
don't have the time to sit down and figure out of the billing and
accounting is correct. And I can guarantee that most parents have no
clue that the State is pocketing the money difference for what they feel
are percentages of fees they want to pay themselves with.
I think it's rather come to a time where a meeting needs to happen at
the State level to discuss these types of ongoing difficulties with
processing the requests and fulfilling the needs of children for things
that they should be able to utilize as part of their CES funded plan.
I'm also not cool with the fact that they are offering certain services
upon the condition of the child's diagnosis. For example a child with
Autism on the same plan is entitled to swim classes (because there is
the assumption they'll prevent the child from being a drowning risk) and
then Noah who is denied the same benefit under the plan because (he
doesn't have the capability of learning not to drown). Subjective
really because who says depending on the severity of Autism that you can
teach that child not to drown? And the benefits should be universal
across the board regardless of diagnosis. CES funding is not based on
diagnosis. And it's even further irritating when you find children in
other counties with Noah's same diagnosis being able to utilize swim
funding but his county says Noah cannot. We have a very unbalanced and
unfair system going on here. And that's not cool with me.
I'm
not purposefully trying to make waves, but these types of things should
be red flags for anyone and something that needs to be addressed and
corrected. The same rules should apply for everyone. While some
families are receiving great services on CES, there are still a lot of
families like ours that are constantly hitting these road blocks.
I
also got a call that they decided to quit funding Noah's hippotherapy.
Yet another problem to deal with. His therapy center called asking for
a credit card that I don't have...
Of
course we were told Noah had 27 sessions covered under CES, he has had
seven to date. The hippotherapy center, as frustrated as I am, express
they too are rather put off with the difficulties it takes to
correspond and receive accurate information status on children utilizing
CES funding. And these centers don't have to accept this funding. So
if it becomes a hassle for them they can very well withdraw from
accepting the program for financial assistance to families. Saddle Up a
hippotherapy center down South has already decided to stop accepting
Medicaid funding as of June 1st. After some phone calls it was then
decided of course that they made a mistake that Noah has $685 left in
his adaptive rec funds. Which would get him through the summer - but
not beyond that in hippotherapy. I'm not sure who is working these
figures but I'm losing very little faith that any of them have any clue
what they are doing.
And
the thing is I don't want to view these people as the enemy but they
are literally driving me crazy. And I don't perceive them as people who
want to assist Noah - but rather who are doing their very best to avoid
helping him. I wish we could get to a place where they'd realize that
there is a better way to work with families than how they are going
about it. And that children with special needs are being denied the
help they truly need and deserve while others make a financial profit
from their circumstances.
I've been trying to pedal faster. Something my mom always use to tell
me in childhood. A phrase intended to mean work harder, try harder,
keep going. Yet sometime no matter how fast you pedal, you can still
be pedaling in circles. This road that I will always be on called the
Special Needs Journey, pedaling my heart out.
I keep trying to
find help in all the "right" places. I spend gobs amount of time trying
to figure out the next step of help for Noah. The older he gets the
more costly his expenses become. I can no longer punt with baby
strollers and make shift bath seats out of typical baby high chairs that
I strip of fabric and lining. Recreational items are triple the cost.
A toddler adaptive bike costing $1,000 out of pocket is now $5,000 for a
child Noah's age and size. He outgrows equipment easily. His long
legs, and trying to get Medicaid to understand that not every child is
on a growth chart of not needing a new wheelchair but every 3-5 years
will likely never happen. Fundraising efforts do very little these
days, partially because I think everyone grows weary at some point in
time of what feels like continually ongoing fundraisers for Noah. I
hunt out non-profit organizations that best that I can - now needles in a
haystack because you can only use one resource once then it's gone.
Most of which I burned up on Noah's early intervention years (ages
1-3).
Non-profit help also tends to be a very time consuming
process. Lengthily applications, copies of your W-2's, recent tax
returns, a story about your life, pictures of your child so they can see
if he's "cute enough" to be added to their marketing campaign for
donors, doctors and therapists recommendations, letters of confirming
diagnosis, and that Noah's condition is degenerative and severe enough
to be considered worthy of help. I jump through all the requested
hoops, sometimes happily, sometimes not. I'll get a hold of many of
these non-profit directors, we'll have heartfelt conversations about
supporting Noah and our family in the community, talks of "we are here
for you," "we'd love to meet you," "you're not alone, don't worry we promise to help," "It's a God thing, you found us for a reason."
I
think that the goal is within reach. Help for Noah is on the way, be
patient, good things will come I tell myself. I feverishly fill out
all the applications to demonstrate Noah's eligibility for help, copy
all the requested documents, reach out to have his doctors confirm
diagnosis and prognosis for his life. I mail it in, timely....
Then Silence.
And More Silence.
Finally
I decide that a lot of time has passed without an update. No phone
calls, no emails. Just silence. So I start trying to send sweet
emails politely asking for a status update of Noah's submission for
help. Trying not to jump the gun or be a nuisance. I give it two more
weeks. More silence. I decide to pick up the phone reach out to the
directors and those who promised to help. I leave
messages, that go unreturned. A week later I try again, finally
reaching someone who picks up the phone by chance. The same person who
promised help now has a change of tone to their voice.
No longer are they wishing to meet Noah, let alone help him. Excuses
follow for why they've delayed getting back to me, their tone says it
all: "we were trying to avoid you with the hopes you'd fade into the
sunset and just go away." They deliver the news as fast as they can
followed by a list of excuses of why they didn't get back to tell you
they've decided to decline help. I've been golfing, surgery, we've had
board meetings, we've consulted attorneys and they say we can get sued
if we help you over another child, our large fundraiser didn't do well
so we can no longer help you. I think I've heard it all. The let down
no less hurtful regardless of how they go about. Half of me upset that
they didn't have the courtesy to find a better way to reject Noah's plea
for help, other than to pretend that an application was never
submitted, and assume that I'd understand that silence meant no.
It's
almost that feeling of when someone holds out both their hands to say
I'm here for you, don't worry. We've got this, we'll help Noah. I take
those arms and believe in them, only to have those same arms push you
away and say... well just kidding. And time and time again this
happens. And I am left feeling so incredibly stupid.
I have such hope and faith in all things - people even that they have true intentions. I suppose I'm an easy mark. Easy to get sucked in by false promises, as in the end my mother also taught me that sometimes things are too good to be true.
Yet where do I continue to look for help? Believing that there is
hope, someone saying yes we'll help you guaranteed just fill out our
application to make it official... then nothing. Why not be honest?
Why lead me on to believe that help is there when it isn't? Why allow
me to invest all of these precious hours gathering required
documentation all for nothing? That is the worst thing that a
non-profit organization can do to a family seeking support and help for
their child with special needs. Don't extend a hand and kind and
loving words and promises that you have no intentions of delivering.
It's
hard for me to have faith in humanity, I want so badly to, but anymore
I think I am simply a bad judge of character. I'm easy to rope in,
because I have no where else to turn just like thousands of other
special needs families in dire financial circumstances. Then you start
second guessing what changed? Everything was so beautifully positive
and embracing. Was Noah's picture not "cute enough?" Did they read
something in his blog that made them feel that this mom just "complains
too much?" What was it that caused this change of tone?
And
apparently I've been so focused on trying to find Noah help in all the
wrong places that I failed to recognize that his bruxism was caused by
an ear infection that maybe had gone on a month or more. Here all this
time I thought I was dealing with a secondary cause of his cerebral
palsy, not a warning that his ears were feeling pressure and pain. It
was only because Noah's little brother, Luke got a summer cold and told
me that his own ears hurt until the lightbulb went off in my head that
Noah too could also have ear pain causing resulting in the only way he
could communicate that to me - teeth grinding. So of course I'm kicking
myself thinking maybe if I hadn't been so invested in peoples false promises I
would have noticed the warning signs sooner than having to wait until
Luke got sick. Both boys are now on antibiotics and hope they will be
on the upswing in the next few days. My throat raw, either a sign of
stress or that I'm about to take on their illness too.
But at
least the sun is now out, the weather and turned into 80 degree days,
which makes a summer cold exceptionally frustrating when you can't fully
enjoy the nice days. And now instead of sunshine I seem to be craving
endless honesty and sincerity. Something that I'm not sure readily
exists anymore.
Noah Mitchell Warden was born December 23, 2008, weighing 9lbs and 1oz by emergency c-section at 8:51am. Noah did not breathe or have a heartbeat for the first 13 minutes of his life. He was taken to Children's Hospital in order to have a procedure done known as brain cooling in attempts to minimize damage caused by perinatal asphyxia. Noah's brain cooled for 72 hours after which time the hospital ran an MRI and an EEG to determine the extent of the damage. Unfortunately, the results came back with devastating news. Noah had suffered "global damage" to his brain. As a result the prognosis was grim. They said Noah would mostly likely never walk, talk, eat or even breathe on his own. Today, Noah has the diagnosis of hypoxic-ischemic encephalopathy resulting in spastic quadriplegia cerebral palsy with athetoid movements. Noah's miracle has brought our story to all of you.
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