"This is what my son has to live with for the rest of his life." "God, why did this happen after everything we had to go through just to see his smiling face?" "Will they find a cure in time so that he can have a chance to walk?" "Will he EVER be able to walk?" These were and are my thoughts after seeing him sit in this absolute marvel of engineering and technology. My emotions quickly changed. Anger, frustration, bitterness, and complete sadness. These were now filling every fiber of my being.
But then something happened...as he was sitting there holding the wheels just rocking back and forth, he let go after a forward push. He looked at us as if he was saying, "What happened?" Then he did it again and this time the biggest smile came over his face. It was if he knew "Now I can actually go somewhere." It was like he knew this was his ticket to mobility.
I'm excited to see how he does over the next few days, but at the same time I know it is going to be hard to watch. On top of everything else, two weeks from today, we have to box it up and ship it back to the distributor (it is only a two week demo). Then new questions will arise, "How do we pay one of these?" "How long will it be before he can have his own?"
But until then, all I can do....no, all WE can do is take it one victory, or defeat, at a time.Figured it out.........
That is just incredible!! After such a short amount of time :) Way to go, Noah!!
ReplyDeleteIt breaks my heart to hear that the chair has to be sent back!!! How much does something like this cost?
ReplyDeletereading your blog takes me back 5 years ago when my son was diagnosed with SMA II... so many emotions it is so hard to figure it all out that first year. i promise you that the terrible feelings do get better.. i don't know how i came across your blog but i wanted to let you know i am here if i can help you in any way please let me know! www.taysenlangstraat.org oh and we see dr. swoboda too! she is awesome.
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