Forgive me for not having an upshot with this post. It’s just a jumble of thoughts about the relationship that my sons have with each other, a topic I wrote about briefly once before. Someone recently sent me the book Far From the Tree, about parents who raise children who are quite different from they are. The interesting thing is that I hadn’t really thought about my child with disabilities that way before, i.e., as very different from my husband and me. What I have thought about quite a bit is that I am raising children who are wildly different from one another.
I have written fairly extensively about the experience of parenting my middle son, James. James is three and a half years old. He has an apparently unique variant of a ridiculously rare chromosomal syndrome. As a result, he has severe cognitive and psychomotor disabilities. He does not walk, except for short distances in a gait trainer. My tentative guess for the future is that he will walk at some point, perhaps needing a walker or person to guide him. He does not talk, but makes about 10 signs and manages to get his point across remarkably effectively, even with strangers, with gestures and facial expressions. He understands much more language than he can express. My tentative prediction is that he will one day communicate with short sentences, probably with an assistive device. He is currently fed by g-tube. This does not inhibit his quality of life all that much – he can swim, usually move about freely, be fed discreetly in public. He should be able to eat orally one day. He has a remarkably pleasant demeanor. He sucks up to strangers, and has a surprising knack for making friends. As I suppose is fairly obvious from the foregoing, he will never live independently.
About his brothers: Thomas is five, and Luke just turned one. Both are developing typically.
So, Thomas. Thomas was 22 months old when James was born. James was in the NICU for 4 months and had a terrible prognosis. We tried to keep it together for Thomas the best we could. I think, on the whole, we did pretty well. But I do remember everyone always saying how happy Thomas was. He does not strike one as an especially happy child now – although, like all children, he has his moments. I always wonder if that was from living with us when we were reeling from the diagnosis, and more importantly, the prognosis. He is an intense kid. He asks a zillion questions and feels everything ardently: fear, anger, joy, suspicion, social nuance. He has a surprisingly sophisticated ability to describe his mixed emotions. We held a fundraiser for the Ridiculously Rare syndrome national support group. I told him he could mark the calendar for that day any way he wanted. He drew a happy face over a sad face over an angry face, because, he said, the fundraiser made him happy, sad, and angry all at the same time.
A not-very-close family friend had a family with five brothers, one of whom had Down syndrome. The other brothers were very laid-back types and treated their brother with easy pride. “Hey, this is my brother, isn’t he awesome? C’mon, let’s play X-box.” I had sort of hoped for that personality in Thomas. Not for itself — I love my self-conscious brooder just the way he is. But because it would make the fact of James easier to deal with.
There was a time when Thomas just loathed James. Couldn’t stand him. Never played with him. He got absolutely enraged when people go on and on about how well James is doing, especially when it’s something as mundane as sitting up. When Luke was born, he said, “Finally I have a normal brother!” Lately this has changed, and I’m not entirely sure why. Now Thomas says, “I love James!” out of the blue. Not as often as “I love Luke,” but he does say it. Or, “James is the best disabled kid ever!” He is more patient when James takes his toys, or he will play a game with James, or make sure he has his favorite toy. Once, after he pinched James, I asked him how he would feel if someone outside the family did that. He had a look of fury on his face. He can pinch James, but no one else can. He is more apt to see what James can do, as opposed to the myriad things he cannot do. For example, that James makes friends very easily. That James is as flexible as a yogi. He asks to hear the story of James’s birth and diagnosis over and over again. He will regale anyone who will listen with the description of the specifics of James’s chromosome rearrangement and “then the plans to build his brain were wrong.” he has recently been asking a lot of questions about the history of disability rights and is moved by it, bringing up a comparison to racial civil rights on his own. Once, in a fit of fury at me, instead of saying, “I wish you were dead!” said “I wish you were in an institution!”
Thomas does not yet fully realize that every time we go out in public, we are a bit of a scene. The public reaction to us is generally, in order of most frequent to least frequent, 1) Staring for a few seconds, then looking away and pretending nothing is out of the ordinary, 2) smiling beatifically, or saying something positive and upbeat, 3) Slightly disgusted look, 4) Actually getting up and moving away from us. Once, a woman came up to us and started going on and on about how children like James are God’s gifts and she asked if she could kiss James’s feet. Well, that generated endless questions. “Who’s God? Why is James a gift from God? Am I a gift from God? Why did she kiss James’s feet? Why didn’t she want to kiss my feet?” I imagine the teen years, for Thomas and Luke, are going to be pretty rough, public-embarrassment-wise. I try to start a habit of Thomas-only outings every so often now. And I will do Luke-only outings, and also typical-kid-only outings.
And Luke. Luke just may indeed be that easy-breezy guy. He is crazy laid back for a one year old. He gets knocked over regularly by his brothers or the dog and just doesn’t make a fuss. He and James are best friends. They crawl all over each other, steal toys from each other. They usually don’t mind this, although sometimes one of them gives the other a smack. But then the other doesn’t care. They imitate each other, read together, kiss each other. It has been strange to see Luke pull ahead of James developmentally in certain ways. He can cruise, and can say more words. Interestingly, even though Luke can say more than James, he clearly understands far less language than James. James is able to answer far more complicated questions. I wonder if this time James and Luke have together, being so close, will always be part of Luke. Thomas never had it. Maybe there will always be a special relationship between the two of them.
We had Luke to bring a balance back to our family. To take some of the focus off disability. He has done this in spades. Everybody just delights in him, and I think it’s because he’s changed the balance of the family.
I wonder, sometimes, what would be different if one of my typical kids were a girl.
And then there’s the way, way future.
I read about a mother recently with a kid with severe multiple disabilities like James. She repeatedly reassured her other kids that they never had to take care of him, that he was not their burden. I totally see where she’s coming from. But I don’t think I can bring myself to do that. On the one hand, I certainly do not want Thomas and Luke to be burdened or feel they must take on James’s care and be resentful of it. We have plans to have a financial trust for James and to transition him to a group living situation before we die. Hopefully care of him after our death is more a matter of visiting, consent for medical care, making sure his care is adequate, and holidays. But on the other hand, I’d like my children to be the sort of people who feel that they should take care of their brother. I don’t want to rule out the notion ahead of time. And I desperately want somebody who has an interest in his well-being to see after him. So for now, well. I don’t talk about it. I don’t say they have to do it or they don’t have to do it, and I hope like hell that at least one of them will step up and do it.