Years ago when we realized that Noah would have a continual struggle
with being able to eat solid foods we searched out ways that we could
make his diet the healthiest that we could to give his brain all the
best we could to aid in his continued recovery. Doctors, dietitians and
nutritionists recommended we avoid foods that had artificial dyes,
colors, preservatives and ingredients and focus on whole foods that were
organic and minimally processed, rich in high naturally occurring fats
like whole coconut milk and avocados. Noah's diet isn't cheap. His
dietary supplements and foods range from Great Lakes Unflavored Gelatin,
Nutritional Yeast, Whole Fat Coconut Milk, organic drinks like Organic
Valley Fuel, Orgain and Enu - and products insurance won't fund like
Real Food Blend's Coconut Calorie Booster. And these are in addition to
the organic baby food pouches that we're still forced to buy when we
don't have access to Noah's Vitamix blender - when traveling or at a
outdoor summer event during the day - like the zoo.
But we have
benefited greatly from a organic line called Amy's Kitchen. In a pinch
if I didn't have time to cook Noah an organic, wholesome meal - I could
rely on a frozen Amy's meal or product to blend for Noah. It's what we
blend for him if we are dinning out at a restaurant as a family because
restaurants don't blend foods for Noah. So we have to blend them from
home and take his food in a thermos to our destination. When we heard
that Amy's opened up the very first organic drive thru restaurant in
California this summer we were so excited because we have great hopes
that Amy's will spread like wildfire and that we'll have them here in
Colorado soon too. I'm rather dependent on drive thrus - especially
during winter months when unloading a wheelchair in bad weather isn't
favorable, and Noah if he gets out of the car at any food establishment
he expects to eat - I can't just go in pick it up and load him back up -
he'd pitch a huge screaming fit. So a organic drive thru sounds like
music to my ears.
I had inquired with Amy's on the intent for
their drive thru restaurant plans in our state, and explained Noah's
great love of Amy's, and they sent him the sweetest little food care
package in the mail. Goodies of all kinds, a shirt that is so adorable,
candy bars (that I didn't even know they had!), cute magnets and pins,
and some canned soups which will be wonderful for fall and winter meals for
him, and some coupons for frozen meals - which will be so super as he
could eat the Pesto Tortillini all day long and never get bored. And
Luke always must have a stock of Amy's Cheese Pizza Snacks (his primary
lunch request.) And Amy's makes the very best macaroni and cheese! It
was the sweetest gift for Noah ever. And he's been enjoying all his
goodies.
I was even lucky enough to run into a representative
at Vitamin Cottage who gave Luke a magnet and said they hope to put in
an Amy's drive thru in a few years. Unfortunately it sounds like
they'll build it in Boulder first, which would be a 25-30 minute drive
from us one way, but I still have my fingers and toes crossed that Amy's
will be everywhere with a little time. I have a feeling it's going to
gain in popularity by leaps and bounds.
Amy's is such a lovely
company that is really true to their values and commitment to
customers. We got to sample some new products in Noah's gift basket -
they have the very best Biscotti I have ever tasted. Sometimes Biscotti
can be super hard and crunchy. So much so it requires a cup of coffee
to dip it in just to even chew it. But Amy's is flaky and light and has
just the right amount of orange in it and is perfectly paired with a
nice cup of tea and will be great for the cool fall days ahead. They
also make a chocolate version which I can't wait to find. And bonus
they are also gluten free! Which we are experimenting with for Noah and
have found reducing gluten for Noah has made a little bit of difference
with skin rashes and overall moods. Metabolizing peptides found in
gluten can cause problems for medically fragile children and those with
Autism because these proteins fail to break down properly for their
particular brain chemistry. Amy's also is now making a line of
organic non-dairy frozen deserts using coconut milks. Which I hope to
also be able to find in stores soon for Noah. He is a child that
certainly enjoys his sweet treats several times a day. You'd think the
child would be overweight with the volume he eats, but he moves so
frequently he burns it off faster than he can pack it on. We hope to
put grocery store gift cards on Noah's wishlist so he can stock up on
Amy's for the winter!
There are lots of children like Noah that
are forced to be on specialized diets to give their brain the optimum
potential to thrive, recover and build new pathways. Diet is a big
neurological consideration and component when you have a child with
special needs. And everything about Amy's is simply a superb recipe
for good health and good food. A big thanks to Amy's for caring so
much, and sending Noah love.
A year ago we were forced to find a way to take on a very large and
difficult loan to obtain a handicapped accessible vehicle for Noah. We
were unable to find any help - donations and fundraisers were
unsuccessful. But we were at a point where we couldn't get any of Noah's
equipment in a vehicle and he is almost 7 and getting heavy to lift in
and out of a car seat. We were falling with him getting out of the car
injuring him and ourselves, and maneuvering spastic stiff legs and arms
out of a small car seat, and trying to get Noah to duck his head in and
out each time was just proving to be too much for us. It's just a fact
of life that all families face when you have a child or family in a
wheelchair. You only have a little window of time to figure out
transportation difficulties.
We purchased a used Dodge Grand
Caravan with a manual ramp, and a jumper seat since Luke is still in a
car seat. The manual ramp and high miles knocked down the price a tad,
but not enough to get it under $40,000. It was the best we could do
under the circumstances. We decided to work through a car broker to
assist us with the process as dealing with car dealerships directly is
its own challenging process. And I found myself with little patience
for the sticker price tag game. And dealerships are great about showing
you things and making you fall in love with them and then slamming you
with a purchase price that you can't reach. Using a broker was just
easier for me to negotiate the terms - and in helping us find a lender
which was no easy feat. When you have a child like Noah your debt to
income ratio - is a joke. But these are our truths, and I'm not
ashamed to talk about them. It's as honest, and real as I can be about
it. This is the reality for most families in the same position we are.
There were far more lenders that turned us down and only one that was
willing to extend us a loan - and in which case there are conditions
like higher interest rates and long-term loans. And our monthly payment
is like paying half of a mortgage.
But by the grace of God, we
found a way to drive it home. A year later the ripple effects of such a
financial purchase still is proving to be difficult. It has meant at
times that we've had to seek help with groceries and necessities and
that we've had to quit many of Noah's out of pocket therapies that we
can no longer financially afford. When you are between a rock and a
hard place you just do what you have to do. It's not a perfect solution
by any means. But we just keep putting one foot in front of the other.
I had a sweet lady at a store tell me the other day that she
feels that she's become a better person for knowing me and me sharing
Noah's story a little bit each time that I come in. That I've changed
her and that I've given her inspiration through my positivity in light
of the continual hardships that this journey throws my way. And that in
itself was a gift, to know that you can shine this bright light for
others and be as happy as one can be despite the struggles. I suppose
that's all that I can hope for is that I can be an example of how to
keep on going - no matter what life throws my way. My mother
must feel the same way as she shares the story of Job with me often likely as a reminder for me not to lose my faith during this hard journey.
For those of you who aren't familiar with Job in the Bible:
"Job is presented as a good and prosperous family man who is beset with
horrendous disasters that take away all that he holds dear, including
his offspring, his health, and his property. He struggles to understand
his situation and begins a search for the answers to his difficulties. Despite his difficult circumstances, he did not curse God, but rather
cursed the day of his birth. And although he anguished over his plight,
he stopped short of accusing God of injustice."
We decided it
was time to fully celebrate Noah's ride. We had a lovely lady named
Melissa that we met this summer who made magnets for Noah's vehicle, and
the back has two magnet signs so first responders can recognize that we
have a child with special needs in the vehicle in the event of an
emergency. We are grateful and humbly blessed that we were able to be
able to obtain this vehicle for Noah - no matter how difficult it is.
He performs wonders that cannot be fathomed, miracles that cannot be counted. Job 5:9
Fall feels in the air. A different kind of cool and crisp few days with
drizzles of rain. Stores already lining up their pumpkin products, it
all points to the end of summer. I had to pick up some meds at the
pharmacy for Noah. I wasn't feeling like being sprinkled on by mother
nature so I chose the drive thru. All was going just fine until the
$2.99 that I had to pay out of pocket for bubble gum flavoring blew away
with wind before the pharmacist could suck it back through her little
metal box, and then me momentarily forgetting I didn't have the car in
park before I opened the car door to chase those three dollars. You
know... life's fumbles. I'm human. If anything it gave the six cars
behind me a fantastic grand laugh.
I thought I owed myself a
decaf coffee after my eventful drive thru experience. So I booked it
for Starbucks which was right next door. I had exactly $5 left to my
name and I was willing to splurge. Warm heaven in a cup would surely
make me forget about the drive thru and all that had gone on in a day. I
parked my vehicle next to a car who had already parked. The driver of
the other car and myself both exited our cars basically at the same
time, although I made it into Starbucks a handful of seconds maybe
before he did, simply because I walk fast to get things done quickly.
When he met me inside he was upset and demanded to know if I expected
him to "re-park" because my van has a sticker on Noah's side door that
says you cannot park within eight feet of my vehicle. Something that
automatically came with the vehicle - as most do when you have a ramp
from the dealership. I tried to explain to him that he didn't
need to re-park, and that I am not legally permitted to park in a
handicapped parking spot if my son is not in the car with me. That I
must park in a regular parking spot and when I do so people are allowed
to park within regular distance. He didn't understand. His jaw was
gaping open. He still was rather disgusted that he thought he needed to
park 8 feet away from me. He proceeded to say it was an "unfair
expectation" for other drivers who could park next to me. I again tried
to explain to no avail. I even tried to compliment him - "hey, it's
wonderful you even noticed that sticker most people don't." Nope. That
didn't work either.
Can't knock a girl for trying. Sigh.
Guess it just wasn't my night. Sometimes that happens. I collected my
extra hot decaf white mocha latte with whip and tried to scurry quickly
away from him, I could feel the heat of his unpleasant stares hitting my
back. I hung my head in disbelief that no matter how I tried to
communicate with him that I was unsuccessful in getting him to
understand the point of that sign. I probably would have been better
off to tell him that the sign indeed did mean that he needed to get a
minimum of eight feet away from my car and to do it as fast as possible
because my car could blow his up otherwise. Then maybe that all would
have made better sense.
"Most people don't listen with the intent to understand, they listen with the intent to reply."Stephen Covey
I have done everything I can to fight to access Noah's Medicaid and CES
Waiver benefits. I've coordinated meetings with the State, I've
contacted advocacy groups I believed might aid and be by my side, I've
consulted with the universe on how to get out of this perpetual cycle of
just special needs denial shit, and to no avail. I've had some stupid
fantasy that little ol' me could change things for the better, that if I
fought hard enough and stood up for what's right and true, then somehow
I'd be able to help Noah and all those like him. But the joke is on
me, really. As I've done nothing to build a bridge between government
agencies and families. And I'm rather done. There is no point.
Wasted efforts on my part. No one wants to back me, no one wants to
fight in my corner. Even other special needs parents even are flaky at
best on their interests to participate in change. I've become a secret
confidant for many families who complain openly about a broken system
that is failing our children, some sharing their accessibility to
benefits where others are denied, but mostly everyone wants me to be the
ring leader- just letting me do the work on everyone else's behalf.
And everyone plays this artificial game in person - the fake let's work
together crap. It's a lie. To your face it's always a lie. They
simply tell you what sounds good in the moment to pacify you in a
meeting. They are complete and utter snakes in the grass.
After
months of fighting (because these things literally are the most time
consuming aspects to special needs parenting), Noah received an APPROVAL
for sensory clothing. Clothing that had been deemed a medical
necessity to assist him and recommended that he needed by a physician.
Noah has severe nummular eczema and extreme sensory sensitivities to
clothing textures and things with seams as a result of his sensory
processing disorder. The medical necessity paperwork was in was then
turned over to Noah's county services who sat on it for a period of time
(as they naturally do), then they came back with their research figures
of comparison clothing from Target and Kohl's, which wasn't even a fair
comparison as you can't buy sensory clothing at either store and the
material and construction are far different and the prices are
reflective of that. Yet, the dispute was that they wanted me to give
them a check in an
amount they seemed fit that I would pay to them for what they deemed
should be my portion. (Which was an undisclosed portion that no one was
willing to discuss to this day I don't even have an idea of that that
amount would have been because communication between CCB's, families and
the State is extremely poor). I challenged that giving any amount of
money to the State for
benefits they were supposed to be helping Noah with sounded a bit
backwards. I attended a State meeting in hopes of "building a bridge"
for Noah and for other families walking in my footsteps, the State still
APPROVED the sensory clothing request and then asked me to send them
how much I spent on Noah's clothing for one year. Which was rounded is
$82 because I'm forced to shop at Walmart for $3.88 shirts and pants if I
can clothe either of my children. It was my understanding that by
sending them that information they'd deduct my portion of Noah's
clothing costs $82, and then the State would assist with the
difference. A compromise I was willing to make even though I had
evidence that other families and different CCB's did not require
families to pay a portion to access adaptive clothing benefits. But I
was willing to try to meet them half way, as unfair as I still felt it
was.
The mutual agreement reached was really that the State
had to assign parental responsibility of clothing costs to some amount
and I simply needed to tell them what we spend yearly in Noah's
clothing. But what the State then decided was that they'd assess a
50/50 assignment of costs. So what that means is that sensory socks
valued at $75, our portion would be half around $40 with tax and
shipping and socks alone on our assessed half would be half of what
we're capable of spending yearly for Noah. When I challenged the
State's decision of a 50/50 financial division of up to $600 (which
would mean we'd have to match that out of pocket $600) ourselves - they
came back and decided to change their minds, revoke the approval and
enter a complete denial.
With a cute little cold encrypted email message that was essentially a dare... to appeal it.
"You are correct
in your assessment that there is “nothing in any written literature
that outlines this 50 percent guideline that you've just determined”.
Because there are no guidelines in rule the decision must be to approve
or deny. I reviewed this request with my Program Services team once
again.
After careful
re-consideration of your request for clothing to be purchased through
the Home and Community Based Services Waiver-Specialized Medical
Equipment and Supplies, the request is denied."
A
spiteful move and an obvious exercise of abuse of power on their part
because I challenged their logic, and pointed out that they were
assigning this rule solely to Noah's case when it wasn't universal for
other families, which they didn't like and clearly we're in penalty
phase. This is how it works when you try every angle. You're still
going to come up the loser. And the State will find a way of imposing a
consequence for speaking up and challenging them. Does anyone care?
Nope not so much. Even other special needs parents talk a good game;
"hey were in your corner" But I'm still looking no one is in my
corner. They've all given up, and really are using me as the special
needs community's mouth piece. I'm the only fool fighting the front
lines BY MYSELF with the belief that I can change it all and make the
world a better place for children like Noah. But, I'm really doing
nothing except spinning my wheels and exhausting my energy and obviously
agitating the State enough that they're having a blast denying all that
they possibly can for Noah. I'm done trying to building bridges. The
State although willing to grant you an approval (with stipulations and
conditions that ONLY apply to Noah and no other child in the State) -
but wait don't challenge us because we'll penalize you to put you
in your place and then change our minds to show you we can and deny it,
unless you keep silent and agree to it.
So now what? I'll have
to spend hours drafting another appeal and then I get to hope that I get
a Judge that sees through this really bad game playing with me and
again re-approves it, only for the State to file their "Exception to
Initial Decision." which the only way around that is to hire an attorney
(even the word attorney gags me at this point in my life as poor Noah
has had more represent his interests than I can even count on one hand)
not to mention that I don't have the money to pay for a retainer and
assume legal costs again to file in District Court once they've done
that to me. And we know first hand what it's like to be slapped with a
judgment as a result of a court loss. Raise your hand if you think this
is all fair? And we are just one family - and one child that this is
happening to. There are MILLIONS of us, suffering because of crap like
this. And no one hears us. We are so silenced, we are have no where to
turn and we're just trying to help our children because there is no
other way to do so when the costs of special needs parenting force you
into bankruptcy.
There are already other appeals for Noah
pending. Noah's appeal for pillowcases for the anti-suffocation pillows
that the state APPROVED, but then denies the pillowcases for them to be
functional is coming up on September 2nd so I can win to have that
reversed too. Because this is how to works. One has to wonder why we
even file appeals, as the State has the ability to get around any
potential win and Judge's order (which blows my mind that it is even
allowed under the Law to so easily overturn a Judge's ruling), so they
have no fear. And this my friends is honestly how this all works. And
if you don't have a child with severe and extensive disability needs I
think you should count your blessings and then re-count them again and
again because this his is no cake walk.
It was to be our last morning in San Antonio. With only a few hours to
play around with before needing to be at the airport, we decided to
drive over to the Rivercenter Mall which allows you access to the
Riverwalk. The Riverwalk has this cool ambiance to it. Then you add
these little restaurants that sit riverside and you start imagining
yourself dinning peacefully and watching the world go by. Someday that
still would be cool to do, but we just walked it - or as far as we
really could with the time we had. It's quite the distance.
They
do have tour boats that go up and down but not one of them from what I
could tell could accommodate a wheelchair. But I really enjoyed the
walk. There are interesting people to meet along the way - which is kind
of how I like life to be. You never know who's meant to cross your
path or bring you a message that you need to hear. There was a
homeless man, sitting on one of the garden lawn edges who had a wrapped
up beer can partially covered by a brown paper bag. Such a sweet and
pleasant man. Who was so complimentary and kind to Noah as we were
walking. Sometimes those who have the hardest journey in life turn out
to be those who can recognize and appreciate other types of struggles.
He wanted to make sure we had seen the best that Texas had to offer and
had hoped that we were able to see the Alamo. He had a good heart. We
wished him well and kept walking. I'm sure not many people stop to
chat with him. It's likely as taboo to be homeless as some perceive it
is to have a disabled child.
Many restaurants invited us in to
dine with them on the water's edge. I wanted so badly to take them up
on their offers, but time simply didn't permit. But, I'm glad they
approached us, knowing we'd need to carry Noah's wheelchair in some
cases up a few steps in order to dine with many of them, they didn't
think twice about asking us. Maintenance boats and workers that
maintain the Riverwalk's greenery were also very polite and kind, moving
their hoses out of the way so Noah's wheelchair could easily go by.
Even other people across the pond enjoying brunch would wave to us as if
they'd always known us.
It's a really beautiful thing to feel
like you're seen. There are a lot of times when you feel invisible to
the world. I can go to Target or or to the grocery store and people
will either do their best to look away or you can't get them to stop
staring. Being approached and spoken to doesn't happen as much as you
might think it does. Let alone a stranger waving to you just because
they are making kind bodily gesture to say hello. There is also some
rich history along the Riverwalk which I loved. Many buildings with
signs that told their stories. Many rusted and worn from age, but
still hanging strong.
The water was an interesting shade of
algae green. And occasionally you could peak through the green to see a
plastic spoon or a piece of trash, but for the most part it looked like
the maintenance crew did an excellent job of cleaning and maintaining
the river. It's a peaceful walk, and Noah loved it. He's very much an
outdoor individual. There was a costume convention going on the day
that we were leaving so the boys were greeted with some very interesting
characters - Star Wars, Disney,.... things with glitter and tails and
horns... oh my. But colorful people that we welcomed on our path too.
Some even were kind enough to pose for pictures.
Then we got
an exciting phone call that the family we had wanted to badly to meet
had come to the mall so we could say a quick hello before we had to
leave for home. That was a really fast walk back, because we were eager
to see them for as long as we could. We had connected with this family
sometime ago through special needs groups and resources. They are the
sweetest family you could ever imagine. Sammi is just a pinch younger
than Noah and has a different diagnosis. She has Osteogenesis
Imperfecta (OI). But nothing stops her. She has the most precious
spirit you could ever imagine. She is a child that when you are around
her, she makes you feel nothing but joy and happiness. She's got spunk
and this incredible energy that lights up when you're around her.
She's so much fun and she made me smile and laugh. And she has the
perfect older brother, John and sister, Sarah. Kind, tender and super
polite and helpful. They are such a beautiful family, and meeting them
was the best gift before we left. And it really made the trip feel full
circle and complete.
Sammi is getting a power wheelchair
soon. Her mom and I spoke briefly about the financial challenges of
trying to afford a handicapped accessible van. It's not easy - not easy
at all. I wanted so badly to hand her the keys to the rental van that
had been provided to us on the trip and say drive us to the airport and
then it's yours. I know that kind of need, I know that kind of struggle
and trying to figure out how to make it all work. My heart still now
that I'm home I keeps thinking about how can I do more to help them.
They are so deserving of good things to come their way. And this
endless cycle that all of us do to try to figure out ways to financially
help our children. It's a very painful place to be as a parent.
Knowing there are so many things that your child needs for their daily
living and that would make the world of difference in their quality of
life - but you fail to be able to access it because it's always of
reach. Imagine walking up each morning feeling that defeated. We do
the best we can do in the moment - but a handicapped van - and ramp
just to allow your child to go to the mall or a grocery store, or see
the world... I keep thinking if I pray hard enough on it that Sammi will
get her van, somehow, someway that precious little girl and her family
see some wonderful and amazing things come their way. I love them. I
hope I get the chance to get back to San Antonio someday to be able to
spend more time with them.
We soaked up our handful of maybe
20-30 minutes at the Disney Store together, we said our goodbyes, I
wanted to hug Sammi, but us special needs moms know we have this
unspoken pact that we don't touch each other's kids because we
understand how medically fragile they are and GERMS!!!! So we do that
kind of we'll see you around virtual hug kind of thing. It doesn't
matter what the diagnosis or condition that our children have, we
recognize our lives mirroring each other. Our worries, our fears, our
greatest joys, the pain and incredible beauty we get to experience each
day with these amazing souls - we know it because they live it too.
We
headed back to the hotel and quickly checked out and headed to the
airport. We got a bit lost trying to find our departure pull-up, but
our hosts were there to rescue us and guide us the rest of the way. I
didn't want to leave. For just a few short days they not only gifted
Noah with this beautiful vacation but they gave me so much peace from
the daily strains and struggles that come along with special needs
parenting. I pray they are blessed a thousand times over for what they
are doing for families like ours.
Noah was blessed with a surprise visit to The San Antonio & Aquarium
and Sea World. He had been telling his speech therapist for weeks that
he has wanted to see a dolphin and visit the beach. So we were
exceptionally excited to be able to make one of his dreams come true.
Sometimes surprise blessings turn out to be the things that take up the
most room in your heart. There is something to be said for
the unexpected coming your way. And I never thought not in a million
years that Noah would ever get to see a dolphin in his lifetime - no
matter how many times he told his speech therapist he needed to see
one.
The San Antonio aquarium was easy to find. It has a
little splash park right before the front entrance which feels rather
necessary with the Texas heat and humidity. While, I'm used to some hot
temperatures combine that with humidity and it's a whole other weather
beast! Surprisingly, the one I was most worried about - being Noah
with no ability to self-regulate temperature did very well with that
Geleeo liner in his wheelchair. We still did have to occasionally seek
some shelter and time out from the heat, but overall he trooped right
through it. Our aquarium here at home is very different - so we were
so surprised when we turned the corner of the entrance to see a complete
exhibit of life-sized dinosaur robots that actually roared. It scared
Luke so bad because he thought they were real. And they did look
pretty real. And they sounded pretty real too. A very cool exhibit -
especially for little ones. Noah kind of looked at the dinosaurs like
he was calling their bluff - his eyes said it all: I know they aren't real. But he still thought they were neat.
The
aquarium was very disabled friendly with a ramp to the main features.
Which was wonderful. Sometimes you go to a new place a little nervous
about if it's wheelchair capable. And it was great. It's a smaller
aquarium but still so much fun. It had fish, birds, snakes, spiders...
mixed in baby stingrays, and turtles. All the things that little boys
just adore. Noah loves seeing new things and especially loved it when
his dad took him out of his wheelchair and took him up the stairs to
look at the aquarium tank from up above. Views that Noah doesn't
normally get to see unless we are his legs. He absorbed the moment
draped over his daddy's shoulder.
Luke, being the incredible
little brother that he is, even handpicked some special 3D books that
made noise and told us we had to buy them for Noah. He's so sweet like
that, but I must really teach him soon how to assess price tags on
things! Insistent that Noah needed it we took it to the cashier and it
found it's way to our suitcase. Chris and I just looked at each other
and shrugged - we were building memories and this isn't something we get
to do everyday.
After the Aquarium we made our way to meet our
hosts to pick up tickets for Sea World. Even typing it, I'm like pinch
me. Sea World. For REAL! Yep, we made it all the way there. And
here is the best part: They arranged for Noah to have a meet and greet
with a dolphin!
We stopped to have a quick lunch. There are
some familiar food chains in Texas, but a lot of things at the same time
that we were unfamiliar with and don't have here. We decided to stop
at a place called Luby's for lunch. A Cafeteria style place. It was
really fun, we've never been able to dine out at a place like that with
Noah. We've thought about it. But, what has held us back is how to you
juggle holding a food tray and pushing a wheelchair. But, we braved it
in the name of new experiences. We probably hadn't been in there more
than 2 minutes before someone greeted us and held our trays for us as
we went down the food line and picked out our lunch. We didn't even ask
for help. I think that's the biggest thing - I always welcome the
help, in fact many times I flat our crave it. But I feel immense guilt
if I were to ask for it. So when someone instantly recognizes I need a
hand and is there for me, I want to literally wrap both my arms around
them and hug them, and try to make instant friends for life.
The
food was great, and they had Noah's favorite - cheesecake. Everyone
was super friendly and spoke to him too, which made my heart smile. I
love it when people can see a little boy - and not a little boy in a
wheelchair who can't talk back. Texas is exceptional like that. A very
friendly and loving State - hands down I wish it was a bit more like
that here. While we still have our occasional good people out our way,
it's not to the degree of hospitality and friendliness that Texas has.
We
ate our lunch and soaked up all the hydration we could get and headed
out to Sea World for our adventures. Sea World is huge. And I mean
really huge. The parking lot alone I think blew my mind. I don't think
we have any attraction out there quite that big. All of the
handicapped parking was taken. So we unloaded Noah and then had his
daddy find any parking spot he could find. It was really the only
option when you need ramp access. I was a tad worried that Sea World
would not allow Noah's juices and foods through the gate and they don't
permit outside food and drink. Although they did check his bag they
didn't mention a thing and let us through. Which was kind of them. I
always feel like I'm on guard to defend Noah's needs. What a relief.
Everything was just perfect.
The heat was really hot, and a
blower mist fan we had bought at our local zoo for Noah died literally
not even 5 minutes into Sea World. I still don't know what was wrong
with it, but thank goodness we spotted a Shamu spray/mist fan and we
gladly forked over money for it. It was HOT! We had no idea where we
were going. We looked the map and kind of just went with a path that
led us to the Orca Whale Show! We were blessed to have reserved
seating so Noah could see well - even in his wheelchair. It's amazing
how big Orca Whales really are. Massive. You always think well
they're big - but never that big. Noah was glued to the tank and had
his classic giggle and smile. Luke was so in awe that I'd ask him a
question and he wouldn't respond because he was so absorbed in what he
was seeing. It was a really great show, just the right amount of time -
about 15 minutes, not too long, not too short. We decided we needed
something to keep Noah hydrated so we grabbed a frozen lemonaide and
tried to feed it to Noah. First time he's ever had a frozen lemonaide
and he loved it. We could not spoon it fast enough for him. Which made
keeping him hydrated a thousand times easier.
We still had to
catch some shade when we could and go into gift shops here and there to
give us some relief, but Noah didn't even demonstrate any kind of signs
of heat problems in his skin tone and face. We had a little bit of a
walk to the Dolphin Cove, and met with a very nice man who coordinated
Noah's Dolphin visit. Other staff kept the other dolphins busy, while
one named Nellie was isolated to play with Noah. She was really sweet
and very friendly. Noah and Luke were able to feed her fish and pet
her. You'd think that a Dolphin would feel a bit like a fish - on the
slimy side - but not at all, a hard like surface much like touching our
skin, dry and hard. I think Noah didn't even know what to do he was
beyond excited. Nellie playfully splashed and waved to us goodbye. It
was a truly special moment. And something I know that Noah and Luke
will never forget.
In fact, since we've been back Luke keeps
telling us each morning he's ready to go to Sea World and Noah won't
stop migrating towards his stuffed dolphin - a gift from the Sea World
staff for Noah. Sea World certainly captured their interests. We were
worried we'd be stuck in rush hour traffic to find a place to eat so we
opted to stay at Sea World to eat. It's really expensive to eat at Sea
World and I'm not sure I'd advise it - unless you're in a position like
we were and kind of had to.
You can watch the video of Noah's special day here:
We headed back to the car, from a
beautiful experience and day. I almost wish it didn't have to end. I
value these special moments that we can enjoy as a family. We knew that
our travels were coming to an end. The next day we were scheduled to
hop a plane for home. We knew we'd need a little bit of an activity to
keep Noah occupied before checking out of the hotel so we opted to drive
up the Rivercenter Mall and walk the Riverwalk and meet another special
needs family that I've come to know and adore that live in San
Antonio.
When you meet a special needs family for the first
time, it's not the whole book - just the first page and another chapter
waiting to be written.
Right across the street from Morgan's Wonderland is a new therapy center
called CRIT USA (Children's Rehabilitation Institute of Teleton.) It
almost feels like it really shares the same parking lot with Morgan's
with Morgan's Academy in the middle (a middle and high school for
children with special needs). CRIT USA is a really large therapy center
so you can't miss it from the street. It opened in November of 2014
and is a 45,000 square foot state of the art facility that cost 18
million dollars to build. I had the opportunity to schedule a tour
while in San Antonio to view it. I was in awe of it. From the moment
you walk in the doors you can very much tell how unique of a therapy
center it truly is. I've been in a lot of therapy centers and have seen
nothing even close to this before.
What makes this therapy
center even more unique is how it accommodates providing therapy to
children with relying on help from financial donors to ensure that every
child can participate in therapy with a sliding scale of $1-$20 per
therapy. If you have a child with special needs you probably just
fainted when I told you that amazing fact. No insurance? No medical
necessity approval? No PAR's? No restorative potential questions?
None of it. Your child needs therapy and you can't afford it - end of
story this is the place you make a mad dash to. Treating children with
special needs has become a million dollar industry, with equipment and
therapy costs not covered by insurance parents are draining all of their
resources to offer their children a chance at recovery and a quality of
life. So just imagine if there was a place (and I'm telling you that
there is) where those worries were taken care of?
CRIT USA is
extremely clean. Hand sanitizing stations line the facility, the floors
are clean, the walls are clean, chairs and tables all clean. I even
witnessed therapy mats being cleaned after each use. Extremely
important when you are dealing with medically fragile children. They
have all the traditional therapies; Physical Therapy, Occupational
Therapy; Speech Therapy, mixed in with some great new technology Lokomat, which is like a robotic outfit that assists with weight
bearing, standing and patterning of walking. Children walk while
engaging in interactive games and dance programs on a screen in front of
them.
They also have a beautiful sensory room for therapy, and
likely the most gorgeous warm water pool I have ever laid my eyes on. I
didn't even know what to do with myself I kept thinking someone just
pinch me I'm dreaming as you'd never guess that something like this
existed, let alone all children with special needs be able to access
it. Most families in fact come from out of state (families from 38
states have so far traveled for therapy), and spend about 2 weeks each
stay, with room and board generally at the Ronald McDonald house, or by
stating with other families that they have connected with that live
locally in the area. And families come a few times yearly. That of
course is the hardest part would be traveling for therapy, and in our
case really hard as it takes two parents to travel with Noah because of
his high needs and taking 6- 8 weeks off from your employer isn't going
to be possible for most people yearly. Ideally the center has the
potential to be so highly beneficial for children that you'd want to
take your child multiple times weekly, year round.
A large
physical therapy area had really nice and new adaptive equipment.
Various styles of gait trainers, standers, even recreational adaptive
bikes. Tons of money just in equipment alone - to use while there lined
up neatly, nicely and again very clean in a row. It was like a
gorgeous show room of equipment. They have a really quaint and quiet
parent's room where you can wait during therapies or take a moment to
rest, clean restrooms with adequate changing spaces, activities for
siblings and recreational activities through the week for children to
participate in, they have their very own complete medical staff of
neurologists, psychologists and nutritionists to accompany their team
of therapists. It's just beautiful.
The concept of CRIT is
something that I celebrate and admire greatly. Sometimes it feels like
everyone is standing in line to just take advantage of an already bad
situation financially with special needs families. CRIT even has what
they call a "shop" but you go in and get what you need. Pre-loved
items, new diapers... it's all there to help you along your stay at no
cost. You go in and get what you need. CRIT has the right idea 100
percent. They are giving so many children a real chance at help because
they aren't charging these families an arm and a leg for help.
Generous donors are paving the way for possibilities for all of these
children. And I'm all for telling insurance companies they can go hug a
rock - most of the time that avenue feels worthless anyway.
There was
also a beautiful sense of community as you walked the halls. Other
parents openly saying hello, smiling, waiving. It was certainly
friendly, warm and welcoming. I hope CRIT USA expands, I'd love it if
they planted one in Colorado. While predominately a Spanish/American
facility it accommodates and services all children with special needs
and nationalities. If you are in the San Antonio area this center is
definitely worth scheduling a tour/visit to determine if you think it is
a good match for your child's needs. If nothing else your jaw will
drop from all the fancy technology and resources it has to offer. This
center gets a high five and a fist bump! It is amazing.
After
our tour we met the co-founders of Project Angel Fares for dinner at at
wonderful restaurant called Soluna. Texas has amazing Mexican food. A
really pretty restaurant with incredible plants and flowers. We were
greeted by Melissa and Kevin's son, Dylan. He gave us the biggest hug.
A truly sweet and special young man. I could tell in his genuine hug
that he is going to grow up in his parent's footsteps and do amazing
acts of random kindness. He had such a tender way about him for his
young age. Our hosts could not have been more lovely and true to their
mission of helping children and families on the special needs journey.
They have a sincere and honest passion, the kind of people when you are
around them that inspires you personally to find ways of doing more -
giving back more, helping more - being everything you can be to be that
guiding light for someone else trying to find their way out of the
darkness.
Dinner was scrumptious, and I think that Soluna had
the best guacamole and queso that I have ever had. The presentation of
food was just lovely. Comfort food at it's best. A must dine place if
you are visiting San Antonio. After dinner we headed back to the hotel
for the comforts of some great complimentary water and got some rest
for our surprise visit to the San Antonio Aquarium and Sea World!!!!
We anticipated a very hot day at Morgan's Wonderland before we traveled
(being an outdoor activity) so we purchased a product called Geleeo,
which is a cooling liner designed for baby strollers. We gambled on it
working and it did! Fabulous product. If you have a child that
overheats in hot weather or has difficult regulating temperature I
recommend it. With our Geleeo installed in Noah's Convaid Trekker Wheelchair off we headed towards a day of accessible amusement park
fun!
We were greeted by the Project Angel Fares team and
Channel Fox 29 news when we arrived. Our excitement was just
overflowing. We never dreamed that Noah would ever have the
opportunity to visit Morgan's. And here we were! We were given wrist
bands for the sensory areas and bands so that if a child gets separated
from you that they can easily be found. They have a giant map on the
wall with lots of little butterflies demonstrating all the visitors to
Morgan's Wonderland from each state. We placed our butterfly on the
map. Our little stamp that we had been there!
We did some
interviews for Fox 29 for a piece they were doing on Project Angel Fares
and Morgan's Wonderland, and spent some lovely time with Morgan's staff
and Project Angel Fares. They are the warmest and most loving people
you could ever wish to meet. I wish they would have been able to spend
the entire day with us. We enjoyed their company so much. When you
enter Morgan's Wonderland the first thing you come to are two giant
hands holding a butterfly. The butterfly has always felt symbolic for
the special needs journey; as a butterfly is proof that you can go
through a great deal in your life and still become something beautiful.
It is the most perfect statute for a place like Morgan's Wonderland.
It felt like looking at hope, and an instant reminder of what mattered
most. These precious moments.
Luke immediately scampered off,
and I don't think I have seen him more happier in his life. He had hit
playground heaven. And Noah and daddy quickly followed and chased Luke
up a playground that was fully handicapped accessible. There was
nothing that Noah could not do. It's kind of hard to imagine it - as
our days are full of obstacles that being barrier free with a wheelchair
was such a wonderful feeling. Noah was in pure delight. Smiles,
giggles and full body extension spoke volumes about the joy Noah was
experiencing. The park is much bigger than I imagined and there is so
much to do. We only did each activity once, simply due to the heat but
if it had been cooler we would have done every activity there multiple
times.
It's hard to have a favorite thing about Morgan's
Wonderland because every activity within the park is so well thought out
and perfect in accessibility. They even considered the heat and had
large fans that were blowing water mist throughout the park. All
activities from train rides, to carousals, to car rides were all fully
accessible allowing the child to remain in a wheelchair. Everything
dreams of made of when you have a child that is confined to a wheelchair
and is very limited in being able to participate and play like other
children can. Noah got to fish for the very first time in his life from
an accessible dock that was fully sheltered from the sun. Although we
did have one good strong bite, we lost the fish and never were able to
pull one from the water. (Which hopefully is a sign that someday we'll
be lucky enough for find our way back to Morgan's to give it another
try). They are expanding Morgan's and building a water park that opens
in 2017 that will have amazing accessible features. I am crossing my
fingers and toes that we'll find a way to get Noah back to see it.
They
also had a Toyota Accessible vehicle display in the park. Three
vehicles that any family with a child in a wheelchair would simply drool
over. Noah's daddy had to sell his truck a few years ago to help pay
for Noah's out of pocket medical and equipment costs. Something that
was really hard for him and for us to do. He loved his truck. But we
were really out of options financially so through the years we've sold
off many of our possessions just to try to keep going for Noah. So when
Chris laid his eyes on A Toyota Sienna that had an extended cab with
captain's chair in the back seat with one that lowered to the ground to
transfer Noah up and into the truck and a hitch mounted lift to lift
Noah's wheelchair into the truck bed with a shell that would retract for
easy loading and I think I seen his mouth hit the floor. Drool would
have followed but I think it was so hot it evaporated quickly. Chris
was staring at his dream vehicle - and the idea that it was accessible
for all of Noah's needs made it that much sweeter. Yet the price likely
makes it a dream that may never be reached retailing at around
$40,000. Accessible vehicles have some really tough prices.
I
think that is what made Morgan's so special. When you have a child
with special needs you watch all your dreams slowly die one by one, and
your life gets more altered with each passing day. I was watching Noah
& Luke's dreams come alive - and even Chris' seeing that truck and
holding out hope that maybe someday it could be real, and mine as well
as my biggest dreams are moments of us all playing together as a family
without limits. Morgan's Wonderland is a place of possibility. It felt
magical there.
They had amazing sensory areas and green
screens for children. Children of all abilities could make virtual
paintings that are automatically emailed to you so you can save your
child's masterpiece all by a programed wristband. Sensory activities
for vestibular motion like riding mechanical horses, and playing like
you were shopping with a miniature store.
Morgan's also has an
incredible event center where they hold events and activities. So much
thought and effort went into building that park. Sometimes I find
myself looking at things and saying if only they asked a special needs
parent we could make things a million times better - but there is not
one thing that Morgan's could have done or built better than they did.
It is special needs perfection.
Noah got to meet Humphrey - a
turtle that wanted to hang out under his wheelchair. Which was really
kind of sweet. And sadly Luke mis-stepped and didn't see that there
was a tiny gecko by his feet which was a tad traumatic for him once he
realized what had happened, I wasn't sure how to explain that to Luke or
how to comfort him properly through that, so I rather ushered him to
another part of the park and tried to distract his thoughts with another
activity. Honestly I was just praying we'd see another gecko so he'd
think it was still alive to make it easier on him, but we never did.
We
had some hotdogs at the park at the concessions stand, decent food I
thought and we sat at a large picnic area and had lunch together. That
was our very first picnic together as a family. Noah almost being 7
years old and our first picnic lunch with picnic tables. I think people
can't really understand the significance of how limited our experiences
are having a child that is severely disabled so something like this you
can't even really properly put into words. When we were inside
Morgan's Wonderland we were a "normal" family in every sense of the
word. There was not one thing there we couldn't all do together; the
place of ultimate family participation.
If you'd like to watch our news story about our trip to Morgan's Wonderland you can find it here
We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty.' Maya Angelou Love,
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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