(no subject)

[rivka]

My mother e-mailed me last week. There had been an article in her local paper by the mother of a child with developmental dysplasia of the hip, and it brought back a lot of memories of my infancy. She wrote,

I sent you a newspaper article about a toddler in a cast similar to what you had, only yours went all the way to your armpits and covered all but your toes. It brought back so many memories. I would be more assertive now than I was about pain medicine the first time they put your legs in that position. And the senselessness of making you nothing by mouth after midnight for a cast change at 8 AM. Then the doctors were angry because you were hungry and crying, and they didn't really want to give you anesthesia, and because you were breast fed, you didn't want the bottle they tried to stick in your mouth. And they never changed. They always reserved the "right" to give you anesthesia to change your cast and never did. Every 4-6 weeks, new cast because you grew, same routine; frustrated docs, frustrated mom, and frustrated you. That article brought back all of those memories and I didn't realize I was still angry about it.

Sorry. But I loved you and I do love you. Mom

Here's a picture of the kind of cast she means, although mine held my ankles and feet rigid too. As far as I can tell from web resources, now they always use anesthesia to change the cast. I don't know whether or not they now give pain medicine for the first few days - imagine how much babies' muscles must cramp, being suddenly immobilized like that. My mother says I cried all night after they first put the cast on.

She really is still angry and sad about everything that happened. I called her after I received the article, and she reminded me, "when you had your first surgery when you were eighteen months, I had to beg them to give you one dose of pain medication afterward. They asked me, 'How do you know she's in pain? She's not screaming.' And I said, 'I know my baby. She's never this listless and unresponsive.' They gave you one dose of pain medicine, and that was it."

She told me about how I used to work my toes ceaselessly, in the cast. "We knew what you couldn't do, but you were just happy with what you could do. When they changed your cast so your feet were free, you moved your feet all day and you were so happy about it." I was even happier when my dad made a sort of a stand that I could be propped up in (obviously I couldn't sit), with a big front tray for toys, and happier still when I developed enough arm strength to pull myself across the floor.

My mother also said, "I didn't know as much about child development then as I do now, but I decided that you were going to go everywhere. Even when you didn't fit in a carseat, I never left you home. You went to the store, you went to the library, you went to school for show and tell. You know I didn't really take any pictures of you in your cast - I was too depressed - and that's one thing that I wish I had done differently. But at least you know that you went everywhere." (I know from my research on children with disabilities that this isn't as common as you might expect - lots of families of disabled children wind up socially isolated because the parents don't want to expose the child to other people's questions or odd looks.)

I cried a little when I read the article my mother sent me. Not for myself - I don't remember anything about any of this - but for her, and how hard it was for her. It's strange that, on the same day that I got the letter, mactavish posted about philosopher Peter Singer's belief that parents should be allowed to have disabled infants euthanized. He thinks that everyone in those families would be happier if parents were allowed to get rid of their "mistakes" and try again for a non-disabled baby. That's his response to my mother's sadness and anger. What if someone had come to her while I was screaming during a cast changing, and pointed out that I was miserably unhappy and had a "poor quality of life?" What if someone had pointed out that I'd go on to need multiple painful surgeries? What if her depressed unwillingness to take pictures of me in my cast had been held up to her as proof that she'd be better off without me?

Comments

[kalmn.livejournal.com]

i can't answer the what-ifs.

i'm glad you are here, however. having you here improves *my* quality of life. (take that, you horrible little man!)

[hug]

[bcholmes.livejournal.com]

Yah. What she said. You're good people, Rivka.

[therealjae.livejournal.com]

This is the third what-if I've read much along these lines. It's interesting, but what this issue has raised for me is an awareness of just how much of a difference each individual person can make in other people's lives, in the world, even when they're not making a conscious effort to do so.

You make a difference in my life, more than I can say.

-J

[elynne.livejournal.com]

*nodnod* What you said. Thank you for putting it so well.

[mittelbar.livejournal.com]

I suspect that if her unwillingness to take pictures was held up as proof that she'd be better off without you, she would have bought a professional photographer's setup and spent 12 hours a day taking pictures. Thus making you miserable, no doubt. :-p

Re:

[rivka.livejournal.com]

I suspect that you're right. My mother rocks.

[elisem.livejournal.com]

My mother rocks.

That is becoming obvious, the more I read what you write about her. It's very cool. I'm glad you have her, and vice versa.

You rock too, you know?

[anotheranon.livejournal.com]

Your mom sounds like a good and tough lady. I cannot imagine what torment parents go through, wondering if there is anything they could have done more/better/additionally for their kids. She did her absolute best for you, and from what I've seen you turned out great :)

[saoba.livejournal.com]

The article your mom sent made me sad. Her letter to you was, as I would have expected of your mom, honest, brave and loving.

And it strikes me that you remind me of your mom in a lot of very good and important ways.

Just sayin'.

Have some disablity/Singer rambly thoughts for elsewhen. *This* comment is reserved for mentioning to you, and to your folks if you like, that you are Good People.

Barbara, who considers that trip to Iowa and meeting your family to have been one of the great joys of my life.

[mittelbar.livejournal.com]

Have some disablity/Singer rambly thoughts for elsewhen.

Yuh huh.

[patgreene.livejournal.com]

Your mom sounds like a wonderful person. But then, she raised you.... and you're a wonderful person too.

As regarding Peter Singer...um, yeah. You are living proof of the inadequacies of his theories. The world would be worse off without you.

[wcg.livejournal.com]

"What if?" is a very difficult thing to face, as the answers are never truly known. Fears and doubts can take wing and turn into terrible beaked black corbies pecking out the flesh of your heart.

But for your mother, and for your father, and for you, I'm inclined to say "great tests are great gifts." They faced the tests, and they conquered them. Their great gift is a wonderful daughter, the like of whom I never would have imagined had I not come to know you.

[xiphias.livejournal.com]

I think I've got a good guess about your "what-if" thingy. I think if Peter Singer showed up when you were an infant and said those things to your mother, he would never have gotten a chance to get tenure at Princeton, because your mother would probably have euthanized him.

I mean, just guessing, I've never met your mother.

Re:

[rivka.livejournal.com]

It's not that I think my parents would've been swayed by Singer's argument. They would never have considered euthanasia, of course. It's just that my mother had such a hard time advocating for me, even as it was.

I think it would have been even harder for her to fight for my rights if there had been people in the background whispering that I wasn't really a conscious being anyway.

[ailbhe]

*lump in throat*

But it's not the euthanasia thing that gave me the lump, just the first part. The latter part gave me an angry.