I just put Armand down to sleep in his bed a little while ago. It’s my favorite time of the day: so quiet, he snuggles up, and occassionally reaches for me in the dark just to make sure I’m there. Sometimes he’s already asleep before I take him into his room, or he goes to sleep pretty quickly; other times it takes a while, but he doesn’t really fight it — he just lays there with his bedtime buddy looking around at his stuffed animals and the ceiling. Tonight was one of the “take a while” nights. Every couple of minutes until he fell completely asleep, he’d pop up and look at me for a second, before tumbling on top of me. Anyway, at one point as he’s drifting off, I have one arm draped over his little legs, and he reaches down and grabs my hand to pull it around him. He lets me know he needs me there, without acting “needy” — I make him feel safe. And that’s one of the greatest feelings a parent can have (at least this parent), that their child feels safe next to them.
It’s moments like that, no matter the outcome of any treatment, that I will miss one day. And I’m not looking forward to it.
Armand has a cousin just a few years older than he, Nate. My brother was telling a story about how, on his second birthday, they were taking him out to dinner and as he was gulfing down his birthday ice cream, he says, “This makes Nate happy”. Hilarious story that I’m sure I probably told wrong somehow.
It’s also a little sad, because of Armand’s condition (both his GM1 and his unrelated hearing impairment) he has a tough time speaking. At his peak so far, he’s only had about 6 words: “Mom”, “Light”, “What”, “That”, “Hello”, and “Hi!” (“Hello” was strictly for phone use, “Hi” was in person). I swear once he also tried to wake me up one morning with “Up!”. Now the only real words he uses is “Hi”, with this perky little voice, and “Yeah” when he does something he thinks is cool. Aside from that, it’s mostly grunts, cries, laughs, strains, and his trademark pouty lip. He says a lot with just his face. He’d make a good mime if he was quieter.
For reference, Armand turns two on Friday.
Some of you may know he finally got his hearing aids at the end of last month. He’s now accustomed to them, part of his daily routine. He even helps put the lube on them to make it easier to fit them in his ear. Well, now on Wednesday morning he starts speech therapy. I don’t know how long it will take for him to finally breakthrough and start to get verbal communication back and forth with us. I’m excited to hear what little thoughts he has bouncing around in his head. I bet they’re both goofy and insightful, just like he is. I’m also excited to hear him possibly add a new word to his repetiore — “Daddy”. I’ve been waiting over two years for that moment. Well, actually more like a lifetime.
And it’s another moment that I won’t want to let go of, that I will miss.