Tuesday, September 28, 2010

The Meaning of Love

A parent of a PDA child asked me if I could recommend some of my blog posts that offered parenting advice. So, I went searching through my old posts.

One post I happened to find, Locked Out of Advocacy, had some comments on it that really bothered me. I happened to quote the book Before and After Zachariah, by Fern Kupfer, mother of a very severely disabled boy. As I said back then, she is possibly the most hateful parent of a disabled child I've ever seen. Yet several people posted in defense of her, claiming she'd done what was best for her son by institutionalizing him, and pointing out how severe his disability was (Fern never stated in her book what his diagnosis was, but one of the posters said he had Canavan's Disease - one of the few disabilities I do consider tragic).

I've seen this in other occasions, too. And I wonder if people really know what parental love is. I can have respect for a parent who makes mistakes, even very grievous mistakes, as long as they love their child. But there are some parents who do not love their children, and from what I've read in Fern Kupfer's book, I'd say she was one of them.

It's certainly possible for a loving parent to institutionalize their child. They may believe they have no other option, or that the institution can give their child a better life. I read one book, can't remember the title, where a parent decided to institutionalize her cognitively disabled child because she imagined what it would be like for her if the majority of people were geniuses, and decided she'd prefer to be with her own kind. I'm not sure she made the right decision there, but she certainly made it for the right reason. As did the mother I met on a forum, who had two seriously disabled children - one severely cognitively impaired child who had life-threatening seizures, and one bipolar child who was constantly attempting suicide - and she realized she couldn't keep both of them alive with the resources she had. She compared her decision to institutionalize one of them to Sophie's Choice.

But Fern Kupfer's husband once said, while they were contemplating institutionalizing their son, that it would be great if they had enough money to hire live-in caregivers, so she wouldn't have to take care of Zach, and he could stay in their home. And Fern replied that just seeing her son, with his severe disabilities, made her feel depressed. If they had that much money, she'd still institutionalize him so she didn't have to look at him.

Let me tell you, that is not how a loving parent feels when they look at their own child. My own parents have felt depressed thinking about my struggles, but when they look at me, they see this wonderful person who deserves the very best they can give. They do not see 'damaged goods'. And if someone said something like that about me, well, they'd have a fight. That's another part of how a loving parent feels - this sense of protectiveness, that this child is their responsibility and they have to ensure the best for their child. No one can be a perfect parent, but being a loving parent means wanting to be a perfect parent, because the thought of making a mistake that could hurt that wonderful person you're responsible for is possibly your worst nightmare. And this is what every child deserves. One or two people who will love them no matter what, will do their absolute best to give them what they need.

That's the meaning of love.