What does it mean to live a “normal”
life? Everyone has his/her own idea of what it looks like or should
be. I'm sure many people look at Colby and me and think holy good
gravy, what complicated,
most un-normal lives they lead! But
actually, lately Colby and I have what I consider very normal lives,
and I'm loving it. I know I complain a lot about issues with
insurance, and oh yes, it drives me completely bonkers. But overall
Colby and I are so blessed to have the lives we do. It's hard not to
be paranoid about that. Seems like I'm always waiting for the other
shoe to fall, for something to go really wrong. As it has so many,
many times in the past. For now, things are going damn good, and I'm
trying my best to chill out and enjoy it.
For example, today we took Colby
swimming. Then took him to Great Clips for a haircut. Then home to
get a bath and get on his hand splints and AFO's for the day. That's
a perfectly normal day for us. Colby is able to go to school 4 days a
week. It's on a very shortened schedule, he doesn't particularly like
it, and a one-on-one nurse attends with him. But still, he gets to
ride a big yellow school bus and go to school without his mommy
tagging along. To me, that is normal. Colby has done amazingly well
since having his trach surgery, followed by his spinal fusion surgery
a couple years later. I cannot find the words to describe what a
difference these two surgeries have made in our lives. Colby was
sooooo sick there for a while. A 37-day hospital stay, a 39-day
hospital stay 5 months later. Really horrible stuff. Life
threatening, we almost lost him more than once kind of stuff. And I'm
not saying that might not happen again some day. I pray it doesn't.
But do you know how many times Colby has been admitted to the
hospital for a respiratory illness since these surgeries? Once, for
11 days, a couple of years ago. To me, just staying out of the
hospital lets us lead “normal” lives. When I hear of another
really sick, hospitalized SMA kiddo, my heart breaks for the family.
It's awful. I sure as hell don't miss those days. So if sweet boy can
stay “healthy” and the only reason we go to Cincy Children's is
for scheduled appointments and a couple of simple procedures, fine by
us.
And this house?! Yes, absolutely,
positively, we still love, love, love everything about this house!
Didn't love it too much when the AC went out, but that's all in the
past now. I was giving Colby his bath tonight and starting thinking
how wonderful it is to have the facilities and accessibility Colby
needs in our home. Everything about this house is still beautiful and
perfect. Wouldn't change a thing. Ok, that's a total lie. I'd give
anything if this sewer line project that has every single street in
our neighborhood jacked up was over, but hey, you can't have it all.
The house itself, still wonderful and perfect. I'm able to transfer
Colby if I'm by myself, and that gives me a sense of normalcy.
There you have it. I'm so happy Colby
is staying healthy. We have a perfectly made, beautiful home that
allows us to more easily care for Colby. Feeling so grateful and
thankful right now! Looking forward to hopefully more normal-ness in
our near future!
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