Saturday, November 14, 2015

Closing a Chapter When You Don't Know How to Begin a New One‏

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I've slowly been pushing myself to find new homes for all the equipment Noah has outgrown.  And he's outgrown a lot.  And when I say outgrown, I don't mean like how a baby outgrows a toy, or no longer needs a highchair or a baby bouncy because their gross motor skills have finally developed.  I mean he simply grew too big to fit into any of them, but still technically needs everything.

I found new loving homes for all of Noah's adaptive medical equipment that he has gotten too big for.  Most of it boxed up today to go to a home in California to a family that has adopted four children with special needs who needs them.  A little boy named Thomas will soon be enjoying all of Noah's old things.  It's just stuff right?  But in reality it's so much more than just stuff.  These things allow children like Noah to participate in the world around them, it adds to their quality of daily living and life, and in most cases is completely necessary to meet their caregiving needs.  And while it does my heart a world of good knowing that Noah's gently used items will help another child, a part of my heart is still heavy to have to say goodbye to all the things I worked so hard to get for Noah.  All of it out of pocket costs - and it all cost thousands of dollars to obtain.  I looked at it all thinking how hard I worked to get it all.  And I worked really hard.  Harder than anyone could ever  imagine.  Incurring debt, doing without anything and everything I could do without to make it happen, even his grandmother using her severance pay for a $1,700 adaptive chair for him at Christmas.

I think the thing I'm struggling with is the feeling of starting over.  I said goodbye to two bath chairs, a special needs car seat, an adaptive toddler bike, a Freedom Concepts Chill Out Chair, Noah's first wheelchair that I fought so hard to pay for because insurance denied it as a non-medical necessity, and special needs toddler therapy swings.  Admittedly, it's all been stored in the basement longer than it should have been.  In my mind maybe I imagined that I could still cram his long lanky legs and tall torso into them, even knowing truthfully there was no real way.   Or maybe I just couldn't get past moving forward and closing that chapter on Noah's toddler years and all that came along with it.  The biggest roadblock for me was knowing I had to close a chapter on all these things that were too small for Noah without having the power or the ability to move forward to replace any of it in larger sizes.   And it's much harder now.  Noah's equipment is much more expensive because larger sizes cost more.  And we've used up every resource we had.  And the list of things I need for Noah grows by the day...

Noah's needs aren't going to slow down, if anything they are increasing because what he needs for his age is expanding.  I'd be lying if I said I didn't think about it or it didn't feel like the impossible mission.  But it is just that the impossible mission, for us and for most all special needs families who are in the same boat we are.   And this kind of thing happens each time our children have a significant growth spurt.  There is only so much growth adjustments that are built into these pieces of equipment.  And eventually at some point you're forced to start over several times as a child like Noah grows and matures.  Their therapeutic needs and miscellaneous items they need also don't ever slow down.  It's not quite like buying a dinning room set knowing it will last you twenty years or more. 

For now I'm just trying to focus on knowing soon I'll get to see pictures of a another child using Noah's former equipment and that things are how they should be.  It should be about helping someone else when you can.  And the rest... well I have to just take it a day at a time as I feel my way through how to go about trying to start over acquiring all that Noah needs, most of which unfortunately is customized due to his high needs in larger sizes.


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