I love it when other kids take Boo under their wing and play with her. There were two very sweet girls at the playground–they were maybe 8 or 9? One of them was particularly good with Boo–she’d pick her up, spot her as she climbed (with me right next to her spotting, too, of course), and just generally being like a good big sister. I said something about [her physical therapist], and the one girl perked up and asked me if Boo had a sister named [that].
I told her that Boo is an only child except for the two cats, and we talked about how much we loved dogs and cats. Then, she told me that she had an older sister with that name. She said there were four brothers and sisters total in her family–well, now just three. I asked her what she meant, and she said she had an 11 year old sister who’s never home, a 17 year old sister who doesn’t live with her (she lives with her father), and she had a 21 year old brother who passed away.
I asked her what happened, and she said she didn’t know. I asked her when he died, and she told me last year. I said that that was terrible, and that I’m so sorry she had to go through that.
In my heart, I think it was a suicide. I mean, I guess it could have just as easily been a car accident, and they didn’t want to tell her because then she’d be afraid to ride in a car.
I found out that the girl’s parents divorced, the older sister lived with her father, and the little girl lived with her mom and stepfather. I was like “oh, Boo’s father and I are getting divorced…a lot of people are divorced. We get along very well, though.”
The mom was in the car the whole time we were talking and playing together, and I kept thinking about how much I wanted to go over to her and tell her how sorry I am that she lost her son. I mean…this sucks…REALLY sucks. I believe that if there are soul mates, we are (although I don’t necessarily believe that it’s inevitable that soul mates find their way together, or back together–free will is free will), but…
…losing a child is the worst thing that can happen to someone.
My sister and I openly talked about it for the first time in the last couple days. My niece has very complicated health issues–we probably don’t even know exactly what is the “root” of it, although she has CP, very little occipital lobe, and an adrenal gland insufficiency. Each scary hospitalization yields a little more information on the mysteries of her health problems, but it also makes it impossible for us to put out of our minds the fact that she doesn’t have a life expectancy of 80 years; one of the times she goes into the hospital will be her last.
My sister said she knows some people think that it’ll be a relief or something when H dies, but I don’t see how anyone with a child can entertain such thoughts. Your child is your child. No, having a disabled or ill child is not something that someone would choose if they had a choice between the same child being sick or healthy, but I’ve always said this about my sister: she wanted children, and she got them, and that’s just all there is to it for her. Everything else is just what comes with the territory. I don’t know how she does it, but then again, is there any other choice other than to love and take care of your children the best that you can?
I hate to think about losing her, but I don’t know that it’s necessarily good to be in complete denial, either. It just seems cruel, though. Her twin (triplet) was stillborn. My sister has already had to do the most painful, unnatural thing that anyone has even had to do (bury a child)…it just seems impossible that she should have to do it again, especially now that we really *know* her. She says a few words, she doesn’t walk, but she is absolutely special, valuable, and adding something to life by being on this planet.
No matter how sick she gets, the only way I’ll find anything good of losing her is if it stops her suffering. She is a happy girl. She’s very brave and tough–WAY more badass than me. If she could talk, I bet she could knock some sense into me when I’m feeling sorry for myself.
I guess I have death and devaluation on the brain, because it really irritated me when the real estate agent suggest I move to Town A versus Town B because, although Town B is cheaper, and I have a friend with a daughter in their school system (and she’s happy with it)…Town A has a fancier reputation, in part because Town B has a large “special needs” population program…
…as if that’s supposed to be a “minus.” It’s a plus. I want my daughter to grow up with kids that are different from her. Different skin color is almost impossible, because Long Island is one of the most racially segregated areas of the country, and the non-white school districts, sadly and disgustingly, are a mess. But she can at least meet, learn, and make friends with other kids who are autistic, have physical disabilities, etc. One of the things I like most about where I work is how easily and casually the “CDP” kids are mainstreamed into specials. I think it benefits all the kids. I think that Boo was a little bit freaked out by her cousin in a wheelchair, and it made me sad, but if she is around kids with disabilities, she eventually won’t take notice of their differences, or she will and it’ll be something to talk about but not something scary or weird.
I guess I’m just thinking about the value of every individual person. There was a nasty letter to a parent of an autistic kid that has been circulating, and I guess that’s put it in my head. On paper, someone who is mentally AND physically disabled doesn’t have anything to contribute–they’re difficult and expensive to care for, and they can’t tell you “thank you” or “I love you.” But I know her, and I know without any doubt that she’s on this earth for a reason. The earth would be (one day will be–I hope much later rather than sooner) a very different place without her. She is much, much more than the sum of her challenges.
I guess that’s what spiritual people call a “soul.” If you believe everyone has a soul, you can’t believe that they don’t make a difference.