Noah didn't have the easiest of Easter holidays. He was irritable and moody throughout the day. Holidays are extra hard naturally when you have a child with special needs. They tend to represent all the traditions you wish your child could participate in, but can't. Things like dying Easter eggs, joining in an Easter egg hunt, or even attending a Easter morning service. There was no basket of endless Easter candy, chocolate bunnies, no discovery of the pastel Easter eggs that Noah's little brother dyed. Noah's basket instead was filled with DVD movies and clothes.
We used to have this childhood tradition of
cracking eggs on Easter, two people would pick and egg and one chooses
who hits the other, leaving one egg the perfect condition who celebrates
victory, where the other egg participant clearly is defeated into
cracks. This year all of my eggs were defeated and cracked. Not one
could I win, yet I kept trying. Much like Noah keeps trying. I don't
know how to give up. And it's not because I am strong, not because I'm
not a quitter, it's because I see this little boy before me, who fights
harder than anyone I have ever witnessed fight in my life to do the
simplest things. To touch his face, to kick his legs, to roll to get to
a toy. But he keeps going until he does it. And if he can do it, then
I can do it. I have to. Giving up is not an option for either of us.
determination is endless. And because of him I get up each morning and
continue to fight for him in all the way I know how. I have so many
unanswered prayers. And sometimes all of those unanswered prayers have
caused me to question why I'm not worthy of God hearing my pleas for
help for Noah. I don't question His existence, I don't question the
power of prayer, I don't question hope and faith in all things
possible. But I keep waiting, patiently for things to turn the corner
and asking myself why He isn't listening? Sometimes I wonder if He is
providing gentle reminders - sending people into our lives to to lift
us up to show us we're not as alone as we feel. We'll receive a tender
card in the mail addressed to Noah telling him just how much he's loved
and cared about, formula will arrive in the mail knowing that Medicaid
temporarily denied him, and even today Noah received a very special
package that someone registered a star in the universe named after him.
In all the darkness I cling to that love like a beacon of light,
encouragement, hope and faith that if we keep going... if we can just
keep going that the Noah's Miracle will get there. That somehow,
someway, we'll be able to help him.
On the equipment front, It
was determined that nothing further could be done to modify Noah's Mygo
Leckey Hi/Lo Base Feeder Chair. We've tried all the modifications we
could to make it fit without success. Thankfully, the equipment vendor
is exchanging the chair for the smaller version, the Leckey Squiggles.
Noah will likely outgrow it sooner than later, but we need a chair that
fits now, and I'm relieved and hopeful that the right chair is on its
way. I was also very excited to learn that after six months of trying
to get a product trial of an adapted chair manufactured in the UK, that
it is on its way for him to trial. But as excited as I am, and as
hopeful as I am that this chair will be a great fit for Noah, it's still
deemed as alternative seating and most likely will face yet another
Medicaid denial. The basic price without accessories that Noah will
likely need is $5,300. These price tags are so hard to think about.
And that's just one item, there is a list of items I keep of things that
Noah either needs or that would allow him to participate in the world
with his family. It's such a fallacy that the government picks up the
tab for children like Noah. It isn't at all like that. The
out-of-pocket costs are astronomical.
It makes my head spin, my
heart ache with sadness and keeps our account permanently in a negative
balance. And yet the dreams of providing for Noah continue...
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.