Saturday, January 15, 2011

Weather Challenges

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This week it actually felt like winter with snow included. It's a bit more challenging when you have to drive a stroller in snow packed parking lots to get to therapy. They really should come with optional snow tires for parents like me. I'm not sure which is more challenging holding and carrying both an arching toddler and stroller to a doorway, or just trying to force a stroller with a child in it through the snow. I imagine the same is true for wheelchairs, they don't come any better equipped for the weather.

Noah had a good pool therapy session, he wasn't able to hold the swim sticks this time more than just seconds, but he was happy and allowed us to wash his hair and give him a shower without complaint. His therapist holds him on her lap while I do the washing and the rinsing. Noah will always be a multiple hands job for things like that. It was nice to just sit and watch Noah at therapy be so relaxed. Even if it was just for an hour. It gave me time to relax a bit too. I just sat there with my feet dangling in the water, feeling the sun come in and offer peaceful reflections against the pool water. I don't get many moments like that. For a moment it felt like a kiss from God. A teeny tiny moment of reassurance that we'll be okay.

And it's always so nice to talk to all of Noah's therapists. They each bring to the table wonderful ideas, things to try, goals for me to work on at home. I had seen a poster posted to the therapy doors up prior to the holidays about a little boy that they were doing a fundraiser for that had fallen in the pool and was a near drown. He was on my mind for sometime. I asked how he was doing, and the therapist explained he passed away and didn't make it. It's amazing how you can be heartbroken for a family you don't know and will never meet. But I was. You just root for all of them. Every single struggle out there, you feel pain as if it were your own. You genuinely find yourself caring in ways so intensely that you want to take all the pain away that exists for any parent in the entire world. Sometimes you feel as a special needs parent you are very much fighting an uphill battle. You convince yourself with time that it will get easier, but I can't say that after two years things have gotten any easier.

Even last night I'm dreaming I heard the words mama. Just like dreams before of watching Noah walk and run, I want them to formulate into reality. I want them to jump out of my dreams and become real. But they don't. Teasers as I sleep for something I crave and cannot have.

My older brother brought over a wagon for Noah a few weeks ago. It's still sitting in the garage and I pass it every time I load Noah into the car. I wish I could put Noah in it, but I can't. He won't sit safely. I think about how I can rig it, to make it so Noah could be more like other children. Could I build something, sew something - make a gadget so he too could enjoy a red wagon. My brother said I could sell it in a garage sale if it wouldn't work, but I can't seem to really put it in the garage sale pile - maybe because it represents something I truly want for Noah and can't have. I never did seriously explore the Radio Flyer's Comfort Embrace Wagon, I knew the cost was out of bounds and although I know it has a five-point-harness I wasn't sure how long Noah would be able to fit into it. Yet Noah probably doesn't even care that he can't sit in a wagon, he doesn't even know the difference. I found this quote in a book the other day and it really does speak volumes. Although I still desire so many things for Noah, we have been blessed with that we did once only hope and pray for.

"Do not spoil what you have by desiring what you have not; remember that what you have now was once among the things you only hoped for."


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