Thursday, February 7, 2013

Change Challenge

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To say that Noah's hi/lo base feeding chair has been a huge challenge this week feels like an understatement.  I called the equipment vendor Monday to arrange for help in fixing Noah's broken harness.  The secretary was incredibly rude and short with me, and abruptly told me to go out and buy an industrial size sewing machine and hunt the part myself; in addition she further recommended that I tie up Noah with a t-shirt for support in the meantime - after all she said that's what she tells everyone to do.  I told her that wasn't an acceptable solution for a chair that was only a few months old that should be covered under a warranty of some kind, nonetheless a huge safety issue for a child like Noah, and asked to speak to her supervisor.  I was transferred to a technician who assists and he eventually came out and replaced the piece on the harness and made some modifications to the chair (as it was ordered in a size that was too big for Noah).  Which meant that they needed to raise the foot rests, and find a way to pad the back to make it smaller so Noah's body wouldn't side forwarded from the extra space that was there.   A new hood came into play, they cut the foot rests shorter, and added a very hard foam block behind his back.  Noah was also self-injuring his arms on the rests due to his high tone so I ordered these really cute dog arm chair rest covers in a desperate attempt to make them softer for him.  And now to say the least Noah absolutely HATES his chair.  Hates it.  Something that was working now has become a nightmare, and I have to figure out how to piece it back together the way it was.  I'm sad and frustrated.  This chair only a month ago was a dream come true, and now that it's been tinkered with and broken, it's now become a huge headache.  The soonest that they can come out again to try to put it back the way it was is in a couple of weeks.  So in the meantime all I can think to do is try to dismantle it myself and put it back together again the best I can.  I'm not a pro, but I'll have to try. 

Noah's Chair Before
Noah's Chair After

Sometimes I really wish that it was a per-requisite to any place of employment that assists anyone disabled or with special needs to actually shadow a family like ours for a week.  To truly understand our trials, how hard just one day can be for us, to have a better understanding of how just one kind word can help us, one ounce of help and we're forever grateful.  I admit I was hurt when I spoke to that secretary on Monday.  We just needed a little understanding, compassion and help.  But the world isn't like that - especially when it comes to having a special needs child.  I don't expect that we'd be given preferential treatment, but love, care and kindness can go a very long way.

Noah's sleeping hasn't improved and we're on week two now of his new sleeping schedule.  And I keep thinking maybe our only saving grace will be the time change next month.  We're still at a loss for why he's suddenly fallen back into an odd sleeping pattern.  And even with what feels like lots of lack of sleep he's still very chipper through the day, with only the handful of typical meltdowns because he wants to play with his train or watch a different movie. 

Today is my birthday, (a really unimportant detail in the circumstances of our lives) - the only great thing about it is I get this wonderful yearly chance to make the biggest wishes I can for Noah.  They will always and forever be for him for the rest of my life.  I have nothing else to ever wish for.  And Noah really does love it when people sing happy birthday.  He loves birthdays. 


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