I need to talk about my kid, who has cerebral palsy.
As a new-ish parent of twins, my social life never seems to afford the right moment. It’s not like the pre-baby days, when I’d see friends very casually and all the time. These days, if I’m around other people, it’s a big deal and we’re having fun. So while my son Reese is always running through my mind like a strong undercurrent, I rarely have the opportunity to really get into the gooey heavy stuff with the people in my life. In fact, it took us a year to even start telling people of his diagnosis.
After the boys were discharged from the NICU, people would often comment that we were now in the clear.
There were many opportunities before then. We’d be at a friend’s barbecue, and his twin brother would be jumping on the couch and ruining the table settings. Then someone would try to casually ask if Reese had started walking yet. It just never seemed appropriate to say, “No, Reese isn’t walking. Reese has high tone quadriplegic spastic cerebral palsy. He may never walk. He may never go to the bathroom un-assisted.”
So, obviously there’s a better way to say your kid has cerebral palsy, but I guess I just didn’t know how to say one thing, without saying it all. Then eventually, I was able to tell people, in the somewhat sideways approach of posting a note on my Facebook page. Which sounds a bit trivial and impersonal, but it felt manageable, and I didn’t have to worry about bringing down the party.
I talk about his actual condition all the time, to his various doctors, therapists, and caseworkers. But I want to enter conversations about what his cerebral palsy means, related to Reese’s identity, and for our family. It's so BIG. It's so beyond me. As I manage my own feelings about it, I realize that time is running out for me to be so confused about how to place it.
Soon, Reese will need someone to tell him a story about his life, and that person is me.
I don't know why, but the other day he looked at me, patted my chest, and said, "Momma," and I really truly realized what I mean to him, not just what he means to me.
So one day soon, I need to straighten my tie and unfold a map of the universe for Reese. Or at least a compass that can keep him right side up.
Sometimes, I sit on the corner of the couch when he’s down for a nap, and two hours pass while I stare at the wall trying to sort it out.
How do I prepare him for his life? It's like, Hey kid. I know you're just a kid. But let's get real deep, real fast.
I feel it has to be that way, because he has to have a really solid value system. I mean, the kind of transcendent ideology that will have him seeing past all that he can't do. Seeing past his bad luck. Seeing past all the conventional markers that our culture has arranged for us to section off our lives with.
This story that I'm formulating is always in the back of my mind.
That's one thing I want to talk about.
I also want to talk about how hard it can be.
Reese is a twin. His brother Elliott, doesn't have CP. Recently, I took a trip to see family for the weekend. I only brought Reese with me. I thought it was going to be so easy because it was just one kid. But it was really difficult, and became compounded when I realized that it's not having twins that has me desperately searching for coping skills all the time. It's Reese. He cries for me every time I leave the room. He cries every time he drops a toy. He cries every time he wants to move.
When Reese and Elliott are together, as they are most of the time, I can kind of lump it all together as "them." But this trip was wake-up call to how truly different Reese is.
There's a bunch of other stuff I want to talk about, too. Like how very significant this will be for his brother Elliott. And how I suddenly need to be really financially savvy in order to set up his future, even though I suck at that stuff. How I feel about failing all the time as his advocate to the many medical professionals and programs he's involved in. How hard it is on my body, to be his body all the time. How this has affected all of my relationships and leaves me feeling mostly isolated from the world. And also, the unexpected and growing understanding that the day Reese was diagnosed with cerebral palsy, so was I.
It’s not easy for me to make these complaints to an unknown public. This is his life, and it seems in pretty poor taste to focus on how this has been for me. But I don’t think it would be authentic of me to pretend I am some sort of mother martyr, either.
I need to talk about all this stuff. Probably to a group, or to a counselor, because it's really too much for anyone else. But the thing is, in talking about it, I know that doesn't mean I'll be done talking about it. Or that I'll be done thinking about it and feeling about it.
I just want to do the right thing, and really believe whatever story I end up telling Reese. And in a way, I find myself grateful that I've been such a dispassionate jackass my whole life, because it makes it all the easier to completely throw myself at this.
I don't want him spending his whole life like he's recovering from the injury of it, but I’m not ready to feed him a bunch of shit about God’s plan either. I know that would make things easier, but easier doesn’t count -- to me.
And, yeah, I need the story, too. I need a neatly packaged something that I can check in on from time to time when it’s hard and I start feeling a vague resentment toward the universe. So I'm working on it, and it’s coming along, in all its messy, tearful, joyous forms.