Wednesday, October 30, 2013

New Traditions

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This is the first year we finally gave in and realized that trick or treating with a wheelchair with all homes having multiple stairs was too challenging for us - and for Noah.  So we decided to start a new tradition of trick-or-treating early at a venue that was indoors, and without stairs and just stay home on Halloween and pass out candy.  This year we chose Wings Over the Rockies Air & Space Museum.   With Noah's love of airplanes it was a great choice.  A quiet Sunday, just the four of us, and it was really nice.   Easy in - and easy out.  Noah went as a cowboy this year with his horse in tow.  And his little brother was a blue puppy.   There wasn't a significant amount of trick or treat traffic and it was a large area, so it was really comfortable for Noah.   And his eyes just lit up when he seen the jets. 

I'm not sure I could even count the ways that our lives have changed in the last five years.  Part of it has come in this unexpected natural way, other changes I have fought against with my entire soul,  some changes I continue to even pray for.   But there comes a time in your life when you have a child like Noah that you just have to accept no matter how hard it is, that life will never ever be the same as you once knew it.  Imagining how your life should have been - well it's too painful to even really go there on a regular basis.  I won't say I haven't gone there - I've certainly had days where I imagine Noah is playing, running, talking and making mud pies runs through my mind - the child he would have been... the child he should have been.   But for the most part I try to focus on where he'll end up and all that he's capable of doing with lots of work and most importantly lots of love. 

Noah received his Tobii Eye Gaze device last week.  It's going to be a learning curve of course for both him and us while we learn all that it can do, and how to get Noah to effectively communicate.  Noah already seems to really like the sensory guru program, which is game oriented to teach him cause and effect with his eyes.  The main problem is that his little brother is also extremely interested in the new eye gaze machine, it's hard to explain to a 2 year old - that this $25,000 gadget is NOT a toy.  It still is a dream that I have that the companion software called Magic Carpet (another incredible UK product) will someday also be funded by medicaid with a price tag of another $25,000 - allowing both him and his little brother to virtually play sports together - Noah using his eyes, and Luke using his body.  It's breathtaking software.  And when you are a mother living in two different worlds - a special needs world, and the typical child world you long for bridges so your children to play better together.  This is a link of the Sensory Guru oftware: And the Magic Carpet Software:

We are also hoping that Noah's Krabat Pilot Crawler will be approved by Medicaid.  Noah is showing even more ability in wanting to use his trunk and back muscles and we know he so badly would like to crawl.   We've also applied for the opportunity for Noah to trial a UK product.  We are really crossing our fingers and our toes that he is chosen as one of the children to trial the product.   Most of our favorite equipment comes from the UK or is in the UK and we can't yet get our hands on it.  The power wheelchair situation turned rather sour quickly on us.  On the 5th appointment out of 6, it was deemed that Noah was not performing up to the therapist's standards and she told us she would not be recommending Noah to proceed with a power wheelchair.   It's was especially upsetting for Chris, who has taken off each appointment from work without pay to give Noah this opportunity in his life.  And we have been so thankful and blessed that his employer has been accommodating while we tried to work this out for Noah.   But I won't give up, I believe in Noah.  He can drive, we've witnessed him do it several times and he's deserving of this chance.   He just need someone to take a leap of faith and believe in him as well.  And I am going to pray God sends me just that person.

“As long as you have life and breath, believe. Believe for those who cannot. Believe even if you have stopped believing. Believe for the sake of the dead, for love, to keep your heart beating, believe. Never give up, never despair, let no mystery confound you into the conclusion that mystery cannot be yours.” Mark Helprin


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