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.
Noah's 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...
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.