School, Separation, and Loss

Waiting for the school bus C waits for the school bus.

It's not been easy for me to accept that the twins are going to separate schools now. C seems fine with it, while M pleads with us to let him go to C's school. I guess it represents for me an undeniable divergence in their life paths. While I've come to accept that this is what's best, it still pains me.

Upon reflection I realized why: I lost my younger brother when I was just a little older than my boys are now. Despite my young age at the time, I've always felt the void left by his death.

I've had dreams where he's reappeared, sometimes as a grown man, others how I remember him last. His absence has been a fundamental part of my life's reality. Call it survivor's guilt or whatever you like, I know what it's like to lose a sibling (two, actually), so I have to remind myself that this isn't the same thing. My boys aren't losing one another. They're just spending a few hours a day apart.

Maybe the absence will bring them closer. Whatever the case, this is what has to be for now.

Are You Ready for Children?

In an excellent and provocative post entitled, "Wondering if you should have children or not?" Emily Willingham attempts to help prospective parents — primarily prospective mothers — answer that question by asking them a question in return.

I'll summarize what I think is the thrust of her post: While the chances are your child will be fine, a not insignificant number of parents will have a child with a lifelong disability, and there is no way you can control that. If you're not ready to commit every last bit of energy and time to that endeavor on the off-chance that this will be your future, don't have children.

In her words: "Parents are an accident or a developmental milestone or a virus away from having their lives change in ways no one can predict." She continues, "It's not a question of 'If I become a parent, will I still be able to work?' It's a question of, 'If I become a parent, am I prepared to be nothing but a parent all day, every day, if a sudden change, infinitely unpredictable, requires it?'"

Blunt, uncompromising, perhaps unpleasant, but true.

I don't know how I would have answered her question before becoming a parent. I think I knew it would be hard, largely because of my own experiences growing up (e.g., losing two brothers, etc.). All I know is that now that I'm in this life — like most parents in the same situation — I'm doing my level best.

That said, the fact is that the majority of this burden falls to my wife. I try to be the best, most engaged father I can. And still…her shoulders carry more of this weight.

Raw Nerves and Bad Reactions

If you tell me my son is a curse or revenge from God, I'm not likely to react well.

Tonight I wrote a nasty note to a politician who, a few years ago, made such a statement. He later apologized, saying he'd chosen his words poorly. He did, however, go on to say that medical studies support the contention that mothers who have sinned, in particular by having had an abortion, are more likely to have a child with disabilities. Ironically, this politician is, in other regards, an advocate for the disabled on both a professional and a personal level.

But I digress.

I'm not proud of the note I sent tonight. It was crude and angry and, upon reflection, belied my own lack of sound judgment. Yelling at people online rarely does any good at all, even when you're right, and I know this.

Except, this is my son, and he's not a curse from God or Nature or whatever. And if you say things like that, no matter how you qualify it, you had better expect that some people, especially those actually raising children with disabilities, may not take it well.

I feel bad about having written the note, and in particular for letting his words get the best of me. I'm raw and I'm tired and I need a break. But that's no excuse. It's just what it is.