After our marathon of
hospitalizations for Will last year, his neurologist kindly recommended that we
get a specialized pediatrician who could help us better manage all of the new
specialists Will has to see now.
See, up until about a year and a half ago, Will was fairly
uncomplicated, medically speaking.
Seizure control had always been our main issue. Within the last year and a half, he has
become much more complicated which is par for the course with regards to his
progressive neurological disorder. I hate thinking that he has hit his peak and is now on the
downward side of lissencephaly but in reality, that is the probable truth.
He
didn’t even have so much as a sniffle over the winter. He’s happy and really
has a good life. But in reality, his muscles are losing their strength. I’m sure there is a medical name for
this, atrophy maybe, but every skill he used to have is regressing. He no
longer goes #2 by himself. (Is it
socially acceptable to write #2 in a blog post? I hope so because I just did.)
He won’t go unless we give him his prescription medicine. Some days he holds his urine and at
some point we will have to use a catheter to make him go. His head always flops over to one side
because his neck muscles aren’t as strong as they used to be. Seizure control is
a nightmare and continues to be our main issue.
Don’t
get me wrong; he is still doing very, very well. He has been very healthy considering all of these new issues.
And of course our main goal, his happiness, is always easy to achieve. He loves to be talked to and snuggled
with and there’s always someone wanting to do that.
This
summer will be busy with a lot of appointments. We will be back and forth to the University of Michigan Mott
Children’s Hospital many times.
Will has two surgeries coming up and another week long hospital stay to try
the ketogenic diet once again. (For seizure control.) These are in addition to about 5 other appointments
including a dental appointment where he has to be knocked out in order for the
dentist to try to clean his teeth.
I get overwhelmed sometimes thinking about the amount of time it takes
to care for him. Todd and I both
get caregiver burnout and body aches, pains, and muscle pulls from lifting
him. Some parents with disabled
children would say they’d never change things and that their child was exactly
how he was supposed to be. I don’t
say that. If I could change Will
and make him normal, I sure would.
Life
is really tough on so many people right now for many different reasons. You don’t have to have a disabled child
to feel as if life is eating you alive. Struggles come in many different forms. Somehow you just have to keep on. Navigating through the rough spots
brings steadier steps and a deeper appreciation for the beautiful things in
life. It’s okay to have bad days.
If you saw the doors in our house you would know that I have bad days because I
like to punch things sometimes. (Darn German temper.) But when the dust settles
on the anger and frustration, a beautiful calm bubbles up and surrounds us with
the grace to make it through another day.
This
is life. It’s crazy isn’t it? Crazy good.
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