Usually when I post a blog, I try to make sure that no matter how sad or dark the subject matter of the post may be, that it also finds some light or hope in its words. But not this time. Not this post.
I am the kind of person who will always try to find a rainbow in a storm. A light at the end of the tunnel. But if I’m being honest, I’m just tired. And I’m angry.
This disease sucks. There is no eloquent way to say that. I can’t dress it up in colorful, descriptive words that make it sound better.
It stole Landon from us. It will steal Blake from us. That is not a matter of “if” but only “when.” I can’t change that, I can’t fix that, I can’t stop that. I will have to kiss the cold and lifeless bodies of two of my own children and then I will never see them again. Too honest? Too blunt? Try living it.
Because sanfilippo doesn’t just kill children. It robs them of everything. Before it snuffs the life out an innocent victim, it steals all hopes, all dreams, and any chance your child ever had of having some semblance of a normal childhood, a normal life.
Landon and Blake never understood what they would miss. They never cared. But I care. I have never heard either of my oldest two sons say “mommy” or “I love you.” Blake can’t tell me if he’s hurt, if he’s hungry, if he’s cold…he can’t tell me a single thing. He is a prisoner in a body that fails him more and more each day. And that is his life. And no, he doesn’t know any different, but I do. And that eats at me inside. Every single day.
I know how his life could have been so very different. How he could have loved power rangers, or ninja turtles. How he could have had a best friend and thought girls had cooties, only to one day realize that girls and love make the world go round for a teenage boy. He could have loved the Vikings, or the Blackhawks, or theatre, or chess. He could have been anything he wanted and chased wild and crazy dreams that ultimately might not have panned out, but taught him what he really wanted out of this life.
But he won’t have any of that. And just because he doesn’t know any different, doesn’t mean that it’s okay. It’s NOT okay. It will NEVER be okay. Even though I have accepted that that is his reality, I will never not grieve the child he could never be. Or the man he will never get to be.
Instead of sleepovers and birthday parties, my son has therapy and an increasingly difficult time just sleeping at night. Instead of flag football or city soccer league, he is fighting his body just to be able to stay mobile. He falls every single day. Multiple times. He doesn’t even have the cognition to instinctively catch himself anymore. Most days he can’t even get off the floor without help. At six years old, we are already anticipating a time in the not too distant future where he will be wheelchair bound. His mobility is the last real skill he has that allows him any sort of independence. Any sort of choice in how his day will go. And it is slipping away. Where do you find any good in that? How do you wrap that up in a nice little bow and find a silver lining?
the truth is, you don’t.
You suck it up, you put on your game face and you do what you have to to make it through another day. And some days it’s easier than others. But it never changes the truth. The nasty, ugly, disgusting truth.
My son is dead. And another son will die. And today, I can find no goodness in any of it.