We're preparing for Cyrus' 5th birthday. Yes. It's been five years since we all started this journey.
So far, he's gotten a Ninja Turtle bike, a knight costume (with gauntlets, which he asked for specifically), super awesome knight books, and a trailer he can sit in while I pull him with my bike. He's really obsessed with knights. "Mom, do knights ice skate?" "Do knights wear armor?" "Is armor heavy?" "Can knights not ice skate because of the metal armor?" "Mom, am I being curious?"
Some updates for you:
He still gets most calories through his feeding tube. No. We don't know how long he'll need it.
He still has at least three appointments a week: Speech Therapy (to help with eating), Physical Therapy, and Occupational Therapy. He also does adapted gymnastics once a week. And pretty soon, he'll have horse therapy again. That's five a week. Five a appointments to help him develop. To be normal. Since he can walk, talk, and take himself to the bathroom, these things have gotten a lot easier for us to handle. We still forget, though, that most parents and kids don't go through this routine every week.
Today Mindy took him to another one of his many dates. He went to see the...well, I'm not sure of her title, but she's the one who fit the helmet he wore, the leg braces he wore, and the insoles he currently has. Well, basically she said she can't help us anymore. Cyrus needs to have Botox shots in his legs to help him loosen up. OR he can wear splints at night that stretch his legs. OR he can wear a cast for five days, have it removed for two, then put back on again for another five.
The truth is, he walks and runs funny. We forget so easily because we're still amazed that he can walk (after being told he probably never would). Every day we're in awe of how much our son has grown. And then every so often we're reminded he doesn't look like other kids.
I kiss you, you're beautiful, I want you to walk.
Tomorrow he has to get some vaccines so he can start kindergarten. Tomorrow night he registers for kindergarten. Kindergarten. We weren't sure if he'd be ready. When I got the call a month ago that he no longer needed Special Education, I cried. And cried. And told all of my co-workers who barely know me. I mean, don't know anything about Cyrus' struggle.
Friday night, Cyrus and I have a home study. That means a social worker will come into my house and decide if I'm a good parent to the child. You know, so that I can adopt him.
Because of all of you, I can now afford to do this. Thank you.
I never thought I'd need so many people.
Cyrus is growing up, and nothing makes me happier. I've heard parents say they wish their kids were babies again. That time flies. Well, I'm grateful Cyrus is now a child. I know the days when he won't want to cuddle ("Mom, will you cuddle me on the couch?") will too soon be over. But I want nothing more than for my kid to become an asshole teenager who can drive (did I mention he's almost legally blind?). I love our conversations and look forward to our fights, too. Gone are the days of waking up in the middle of the night to switch with Mindy (the bed for the couch) and hook him up to a feeding machine where the tube would come undone, spray him with milk, make him freeze all night, and then beep so fucking loud when it was done.
Gone, too, are those doctor's appointments when we're told he won't walk. Or talk. Or be able to go to a regular school. I don't miss anything from that time except my ignorance of things to come.
My brain hurt like a warehouse. It had no room to spare. I had to cram so many things to get everything in there.
I know I usually tell you all the sad things. I'm not sorry about that that. The truth is, Cyrus is very happy. So am I. My son is funny and smart. He loves music "Mom, is that a stand-up bass?" In fact, yesterday we were on our way home from daycare when Montel Jordan's 1994 classic "This is How We Do It" came on the radio. I heard him, from his car seat, singing, so quietly, "this is how we do it." Later last night he took a bath. Out of nowhere, "Mom, am I washing myself?" And then he sang, "This is how I wash it." I laughed. I cried. I held him all night long.
He is the kind of kid who laughs in his sleep and then wakes up to tell me, "Mom, I love you because you're an athletic football player."
I say to him, "I love you because you are Cyrus."