Tonight...tonight my arms
hurt so bad I can barely lift them. Kreed split his lip, bruised his head and
cut up his hands. He wanted to damage himself to somehow help the pain
elsewhere in his body (migraines and peripheral neuropathy). Not to mention his
low blood sugars we are always battling. And it is a battle. We do battle every
day. Every. Single. Day. We don't know what Kreed we will get. Sometimes it's
terrifying watching your son self injure himself and you wonder if you are
strong enough to protect him from himself and know that you could get seriously
hurt in the process. And we have. Been bit, bruised, cut, sliced-
everything.
For some of us families we not only have to parent and teach
but we also have to protect. Not protect ourselves but protect our child from
himself. This is incredibly difficult knowing part of your job is to provide
that protection. In those moments we aren't parents, we aren't the ones kissing
the boo boo's or snuggling and finding joy. We are fierce and strong and
sometimes have to do things we never thought we would do or knew we would have
to do for their safety. No parent wants to think of that. But we have to. We
have no choice.
He's our son. And we have moments of joy and we focus on his
quality of life and finding happiness. But some days his body is so racked with
pain due to his medical issues that there is no joy to be found that day. Most
people with Kreed's set of disorders would probably tell you they are in
immense pain every day and just waking up and being present is enough. Kreed
does so much more some days without a hint of pain. But other says he's in so
much pain we do battle.
So today is not a fuzzy loving story telling you the joy we
found today or what an interesting way Kreed sees the world. Today was about a
battle. About his pain. About his lack of communication. About what severe
autism sometimes looks like and we families have to go through.
Even un-screwing the lid to his peanut butter jar brought me
pain and I didn't think I could do it. Getting Kreed ready for bed was painful
and long and hard. Because even after he rages and destroys everything in his
wake, we still have to pick up the pieces and move on. We have to be the
shoulder for him to cry on, even after he's tried to harm us. The moment it's over,
it's over. Then we can go back to being parents. Sometimes it's easy giving
that shoulder immediately. Other days it's hard and you flinch fearing a bite
instead. The fear can get you some days. Everything can get you some days. Some
days are a battle and you don't even know if you've won. And some days are
exhausting and you don't know how you will get up the next day and do it all
over again. But you do. You always do.
Tomorrow we
will wake up and try again. We will try to manage his pain and find what makes
him happy. We will tweak things and adjust things and hope he comes out with a
smile instead of a punch. Because that's what we do. We are there to pick up
the pieces, to love, to cuddle, to hug and be there but also incredibly strong,
fierce and brave for your child. We don't know which kind of parent we have to
be every day, but we always do it with love and show him as much love as
possible.
