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