Wow! I just realized
I haven’t updated my blog in 2016! I’m a
dreadful blogger!! Good thing this isn’t
my full-time job! Not to say that things
haven’t been happening though.
In December, Chad and I went to look at a couple houses
purely out of the sake of curiosity.
Well, we caught the moving bug and bought 3.5 acres in a great
location. Much closer to my work, some
room to breathe, and a really great school district for my boys. Not to say that where we were wouldn’t have
been great, but when you have two kids with special needs, their education
becomes ultra-critical and I believe we are going to be in the right place for
them.
We are building a house on our land and it should be
finished in the beginning of September.
In the meantime, we sold our house on the 9th showing and are
now living in a tiny apartment in Fort Wayne.
Apartment life is not great, but we are so much closer to everything,
including all of Gabriel’s doctors, that we really can’t complain.
The other reason I haven’t updated my blog in so long is
because I thought we were finally going to have a year with nothing to do. We went to Gabriel’s cleft clinic in March.
His doctors remain concerned with his speech and wanted to do a minor
experimental surgery to see if they could make it better. My mother’s intuition
said that with 9 surgeries in 3 years he’s had enough, so I asked if we could
wait a year and address the palate and repair his lip for better functionality
before he goes to kindergarten. Our
surgeon said that he trusts mother’s intuition more than anything else, and if
mom says he’s had enough – he’s had enough.
So –I thought we were in the clear.
Not so much…
If you recall from my last update in November, we had gone
to St. Vincent’s to have a slight curve in Gabriel’s spine checked out. At the time, the curve was 17 degrees and the
doctor thought it wouldn’t get worse, but wanted to do an x-ray every 6 months
to be sure. Good thing we did.
In May, the curve changed to 20 degrees and is now curving
and twisting at the bottom instead of just slightly at the top. I was
completely devastated by this news. I just knew that when he said it probably
wouldn’t get worse that he was wrong. We’re talking about a kid with the
largest cleft palate our surgeon has ever dealt with in 25+ years of repairing
palates. Gabriel doesn’t do anything
small!
So now what? Today we went and picked up Gabriel’s new
scoliosis brace that he has to wear for 16 hours a day. The objective is to
stop the curve from getting worse as the brace will not correct the curve that
has already occurred. If the curve gets to 40-50 degrees, we will then have to
start talking about spine surgeries to have metal rods put in and vertebrae
fused together. Given that the curved worsened in just 6 months and the
horrible internet says that in cases where scoliosis presents itself in such a
young person, the brace won’t help. I hope the stupid internet is wrong.
Gabriel does not like the brace, as you can imagine. I’m including a picture below so you can see
how huge this thing is. Over the next week, we are supposed to work on getting
him to sleep in it and eventually work our way up to wearing it throughout most
of the day as well. He didn’t seem to mind it when we were in the prosthetic office, but getting him comfortable in the car was just awful. Imagine not only
being stuck in a booster seat, but also not being able to move your upper body
at all. He couldn’t reach the window
control to put his window down and cried the entire way home. I expect tonight will be a very long night.
It’s funny when these things happen the thoughts that run
rampant in your mind. I know I’m going to lose readers when I say this, but the
continual crap that keeps happening to my baby has made me a bitter, angry
woman. I pray to a god every night that I am just not sure is listening. I’m
sick of being forced to believe that everything happens for a reason and that
He has a plan for us. If He has a plan, I really wish he’d leave my boys out of
it. If bad stuff has to happen, I want it to happen to me. I can take it.
It’s incredibly unfair for a child who can’t speak
intelligibly not matter how hard he tries to not only have scars on his face
that will always draw attention, but is now strapped with a full upper body
brace that he will likely have to wear until he is done growing and will instantly
mark him as different. I wonder how many people will give him a chance and get
to know the beautiful child he is without seeing these things that make him
different first.
All I know is this hurts.
He’s had to endure more than any child should and it doesn’t appear it’s
going to stop any time soon and I just can’t understand why. Why him?
Why do my boys have to face incredible challenges? When will I get answers? When will we all be able to make peace with
the lives we’ve been given?
Don’t get me wrong. I am so thankful that he (and Ethan) are
otherwise perfect in every way, but God, what I wouldn’t give to have to worry
about how I’m going to get them to all of their extra-curricular activities
rather than getting them to doctor’s appointments and trying to figure out how
I’m going to pay their bills.
The next x-ray for his spine is back at St. Vincent’s in
November. In the meantime, we’re going to get him adjusted to life with a
brace, keep up his speech therapy, and take him camping as often as we possibly
can. Next week we are taking the RV to Destin, Florida to introduce the boys to
the ocean. I’m optimistic this trip will
provide just the break we need from the madness. And maybe we’ll all improve our tans at the
same time!
Until next time…
