My boyfriend’s nephew is a special needs baby. He has cerebral palsy due to a brain aneurysm in utero. He has seizures regularly, he has appointments with therapists almost every day, he’s underweight and is aggressively fed in an attempt to put pounds on him, he has poor hand control and neck stability, and he is still unable to talk or walk. But dammit, he’s perhaps the cutest kid with the most contagious smile and an amazing laugh. His progress is obvious over time and impressive considering he wasn’t expected to survive for more than a handful of months.
I like hanging out with Little Man and I regularly help with childcare. He can be a handful, sure. Some days he’s cranky and doesn’t want to participate in therapy, or eat, or take naps. Some days he’s bursting full of energy and it’s hard to play ALL day. Some days he has appointment after appointment and by the time I take over as caretaker, he is worn out and not as responsive as usual.
The best thing about hanging out with Little Man is nap time. Over the last several months, I’ve honed my ability to snuggle him to sleep and I have it down to a science. The only time I can’t get Little Man to sleep is when his dad feeds him too many brownies and he is high on sugar. He loves it, though, and I don’t blame him. There’s something special about cuddling Little Man. I don’t know what it is, but it makes me feel all kinds of warm and fuzzy and maternal. I enjoy being able to lie down on the couch and cradle him in my arms. And when he’s about to fall asleep, he flops over onto his stomach, places his head on my chest, and passes out. Sometimes, he opens one eye to peek and make sure you’re still there holding him. Sometimes, he grabs a handful of fabric before passing out to ensure that you won’t go anywhere.
We have a sleepytime song. I always sing “Save the Last Dance for Me” to help him drift off to sleep. As soon as he hears it now, he knows, and within minutes he drifts off to sleep.
It’s going to be a hard road for him, as it has been already. My boyfriend and I hope beyond hope that he will be able to talk. Walking and arm movement can be worked with, but the ability to communicate is necessary to be able to function. We want to see him function and thrive.
I get this maternal twitch when I hold him. Sometimes, as he’s falling asleep, I think to myself that I might want this some day, to have a child of my own. My boyfriend and I discuss having children. I keep telling him that I’ll be ready in five to seven years. He laughs and he understands; we both have a lot of selfish living left to do and things we want to achieve before bringing new life into this world. We want stability, careers, a proper roof over our heads, and to have traveled to enough places to say, “Okay, I can take a break now.”
I’m thinking a lot about the future these days. I have an idea of what I need to do to cultivate the lifestyle I want to have eventually. Right now, I need to start taking steps towards it. I guess everything will fall into place in due time.
Today’s song is “Gracie” by Ben Folds, a song he wrote for his daughter. It’s tender and loving and it also expresses Ben Folds’ awareness of his responsibilities. It’s kind of perfect, really.
You nodded off in my arms watching TV
I won’t move you an inch even thought my arm’s asleep