I broke today. Absolutely shattered, a million pieces. No, not the news you’re probably expecting. That’s a ways out still, though I did get a probable date today. No. This is more of the same. Seconds and minutes and hours and days and weeks and months and soon (I fear) years of the same.
I try so hard to be honest and genuine, but also to never
say anything negative about any of my children on a public forum. As it is, it would probably surprise people
how often I feel uncomfortable being so open.
I value both my relationships with my various connections on social media
and my children’s right to privacy, to make mistakes without a permanent record
or public censure. But with my little
boy, it’s always felt so important to also be bold about declaring the miracle
that is his life, his heart.
Today doesn’t feel miraculous. Today feels hopeless, never-ending, and it’s
a feeling I know so very well. Tristan
has the most beautiful, loving soul.
Everyone he meets adores him, and he joyfully returns the favor. But his learning curve often feels vertical,
straight up, impossible to attain. And
for whatever reason this last year or so he has been so….destructive.
He loves to hit. He loves
to throw. And it’s not curiosity or
accidental damage due to enthusiasm or limited dexterity. He pulls dishes from
the sink and cheers as they shatter on the floor. A single dish in the sink and he will find
it. He smacks us in the face and laughs. He throws picture frames to the floor, over
and over and over again. He tries to
pull the television crashing to the floor and rips the cords from their lodgings to the point I’m not even sure they work anymore. I know some of them don’t because I had to
rearrange them all today. And it’s sometimes
several times an hour.
And it never stops.
And there’s no solution. Redirection,
sad faces, communicating with him, helping him take a break, it’s all
meaningless. Even with all my training
and the many resources we have found, I haven’t been able to find anyone who
can help him learn to make different choices. His intellectual, developmental, and verbal
capacity just aren’t there. Neurotypical
children, and even less typical children learn new things after 5, 10, 100
repetitions. Everything Tristan learns takes
tens of thousands of times. It seems as
if we’ve surpassed even that massive number in these areas, though I’m probably
wrong. Who has that kind of stamina???
We don’t have big fancy breakable things begging for his
attention. We’re not idiots. We’re not those parents. It’s the absolute basics. Books on shelves. Dishes in the sink. Magnets on the refrigerator. Pictures on the wall. Items on the counter. Even if every single thing we own were put
under lock and key (where would that kind of space even exist?!?!?!), I am
literally incapable of perpetually keeping dishes out of the sink and belongings
off the counter. There are too many
other tasks needing my energy and attention.
And his reach is growing every day.
I swear it’s like the Star Wars trash chute. The walls are closing in. I don’t want him to be stuck in a baby gate
forever, and they’re not really designed for someone his age and size anyway. From the day we moved in he’s learned and
grown because he has the space to do so.
But now….
I have never in my life screamed like that. I’ve been trembling for hours, though it’s
slowly decreased. My jaw still hurts. My son has now learned
to mimic (near) hyperventilation, which is just so fun. The only thing that gets his attention, that
stops him in his tracks – Mommy having a complete and total breakdown on the
kitchen floor. I held him once he burst
into tears, and we both sobbed for several minutes. He tried to comfort me, whispering “love you”
and saying it again and again until I would respond. I couldn’t stop crying because I knew the
moment I did, the crazy train would just come back around to run me over.
And there’s nothing to be done. There’s not enough respite care in the world to even begin to ease this exhaustion. He can’t sleep without me. He eats all night long, wakes and needs loves, has nightmares that rouse him in panic. We have so many books and toys, multiple indoor playground pieces to encourage his exploration and mobility. And yet it all boils down to this being just another developmental phase we are stuck in. But here’s the thing with a brain injury like Tristan’s: miraculous as all his progress has been, someday we will most likely be stuck for good. He has already surpassed every expectation medical science has for a child with such pervasive damage. And when that time comes, we will have to just carry on without any real hope of anything ever getting any easier. And now we come to our biggest fear: maybe we’re already there.
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