When I woke up today, I challenged
myself to find something positive about SMA. Yeah right huh?! Nothing
like struggling with an impossible task the whole day. Honestly, I
have nothing good to say about SMA itself. If you know anything about
our lives, you know how hard it is dealing with this diagnosis. Well,
maybe I don't have anything positive to say about SMA right now, but
here are some things I've learned and developed over the years
raising an SMA Type I child.
Patience – You may not believe this,
but I have developed a tremendous amount of patience. I've had no
choice but to at times inhale, exhale, repeat and deal with things as
they come along. Patience in dealing with getting the supplies and
equipment he needs. Patience in dealing with people who don't know
anything about SMA, yet assume it's okay to tell me what to do with
Colby. Patience with goofball nurses. Patience with getting Colby
ready to get somewhere. Patience with Colby when I know he's smart as
can be, yet he chooses not to be independent. And even patience with
myself. I try to be the absolute supermom who can do all and fix all
for Colby at all times. And there are days that just can't happen.
After all this time, I've finally become more and more patient with
many people and circumstances. That's a good thing, right?
Support – Colby and I have a
tremendously large and freaking fabulous support system. Honestly I
don't think either of us would've survived this long without it. As
the saying goes, everyone is your friend when times are good. Then
you find out who your real friends are when the shit hits the fan.
I'm overwhelmed with how loving and generous certain people have been
to us. It means everything to me to know that if I'm having a rough
time, I can pick up the phone and call any number of people who will
listen to me talk, cry, vent, problem solve and do anything I ask of
them. No questions asked. And the SMA community is awesome. I'm proud
to be a warrior mama with so many strong, loving, helpful SMA moms.
We support each other, give advice about what has or hasn't worked
for our kiddos, share supplies, etc. No one should have to go through
an SMA diagnosis alone, and I know how lucky Colby and I are to have
such a wonderful group of people supporting us through this journey.
Gratefulness – I have bad days just
like everybody else. Some days are really bad. So bad I truly think
I'm losing it and wonder if I can continue to do what I have done the
last 14 or so years. But I'm no fool. I am extremely thankful for
every single moment and day I have with Colby. Even if I have trouble
with insurance, supplies, nurses and who knows what else, at the end
of day I know how lucky I am to still have my sweet boy. I don't ever
forget that. EVER. Colby is a sweet, funny, beautiful soul. He has
brought me so much joy and pride. When I watch him sleep, listen to
his jabbers, or see him just doing his normal Colby stuff, I treasure
it all. Because unfortunately way too many SMA families have had to
say goodbye to their beautiful children way too early. I don't know
how I would ever recover from losing Colby. So for now, I'll be
thankful for the time I do have with him, along with feeling blessed
that he's doing as well as he is. Sure don't miss those awful, long,
stressful hospital stays.
I will also give a shout out to the
numerous doctors, specialists, therapists and teachers who have
helped us along the way. SMA is tricky. It seems to affect each child
the same, yet so differently, if that makes any sense. The learning
curve with SMA Type I is pretty damn short. You receive your child's
diagnosis then boom, you better hit the ground running as they say.
You're thrown into the big bad world of terminology, appointments,
medical facilities and so much information coming at you. Some of it
correct, some of it incorrect I might add. We've had a lot of help
from a lot of different people along the way. Colby has had some
excellent professionals helping him (and me) over they years. And we
love you all and all you've done for Colby.
So there, that's about the best I can
do. Because honestly, SMA sucks. It's horrible and I absolutely hate
it. But I know Colby and I aren't in this fight alone, and that means
so much to me. I know I've grown as a person and have become strong,
resilient and educated in how to best care for my child. And those
are the positives I cling to when it gets rough. Next blog maybe I'll
share all the negatives about SMA. That will be so much easier haha.
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