According To Peanut

... the moon was asleep, but then it woke up and needed some milk, so she would fly like a bird up to the moon and give it some.

She is so cool.

Statistics are people with their tears wiped dry

Yesterday was Blog Against Disablism Day, and I missed it, because I waited like a good girl to blog at home after work and then found out my computer is still not working right. Ahem.

So I just have a few minutes here to mention a few things. I've had a long post in draft form I've been playing around with about parenting a child with a physical disability, but I haven't been able to quite get it to say what I want to say yet. This is perhaps because I don't quite have a handle on the whole thing either.

The saying is that the disabled are the only minority group that anyone can become of member of any time. It's a thought most of us choose not to consider, unless it is forced on us. When I was in college, the younger brother of a guy I knew, a kid who was regularly at our parties, was in a motorcycle accident that paralyzed him from the chest down. His brother took time off to be with the family, but came back telling us the kid (he was 17) was suicidal, and that he didn't blame him. None of us did. We couldn't imagine it. Within six months, however, he was living with his nurse--as in boyfriend/girlfriend, and the stories I heard about his life rival ones I've heard about Hugh Hefner.

What concerns me about Peanut's future isn't that she doesn't have the spirit to handle whatever comes her way--she's already demonstrated that beyond my wildest dreams. My worries have more to do with other people: with our medical system, our social support network, our society at-large. For instance: In order to get the government assistance we need to keep us from going bankrupt paying for her medical care (yes, we have insurance, but not 100% coverage), we cannot save any money in her name. This includes college funds. In order for her to qualify for medical assistance as an adult in the event she cannot hold a job (a possibility, depending on how her bones and joints grow and how severe the arthritis she will have gets), we will not be able to give her money, or do a lot to assist her in any way financially. This is terrifying to me, much more so than worrying about her possible wish to be a prima ballerina at the ABT. We can play at being middle-class, but we can't do for our child what others can, or what we will be able to do for our next child.

I know she has it better than orphans in the Ukraine with AMC or other congenital conditions. But shouldn't that be a given? Shouldn't adults who want to live on their own be able to do so, and not be forced to live in a nursing home? Really, how is that much different than what happens to those children? In a country that proclaims to value life so highly, why don't we think it is important to pay for feeding tubes for people who need them (insert cutting Terry Schiavo comment here). Is it too much to ask that they just be able to get in the door of a bookstore?

We need to wake up and acknowledge the shameful way we treat sick people in this country. My daughter isn't disabled because of anything she did wrong, but even if she was, is the additional punishment of not being able to receive appropriate medical care a fair trade-off? My child has as much value as any other child, and I refuse to see her marginalized. She is a wonderful and amazing child, and I hope I live to see the day where she and all the people like her are seen by the rest of us as wonderful and amazing first, and only later on does anyone say, "Her knees didn't bend? Wow, I didn't really notice".

Diary of a Goldfish has other, better posts. I heard about this from Special and Needy and Bitch, PhD.

Another Long, Hot Summer

The good news is that her bone has healed fine. She's back to her stand-up/sit-down games, though she's still scared of the slide. The bad news?

Let me preface this by saying no doctor is ever allowed to start out saying, "I'm really worried about this" in regard to anything about Peanut ever again. Ever ever ever.

What he's worried about is that in one of her x-rays, the ball of the femur appears to not be in the right place (in the hip that was repaired). In one of them it looks fine. So he said that since she needs the plates out of her leg anyway, why don't we just schedule that surgery as soon as possible, and they'll go in with some dye to get a better look? If it is out of place, we have to do the hip surgery all over again.

So there are a lot of "ifs" here. And the pin removal, the one surgery we know is coming, will not require a cast--just some stitches and only showers for a week, with full healing in three weeks. But the pain in my shoulder helps remind me of the stress of the last one, and never putting her under general anesthesia again would still be too soon. In this case, it will be sometime in early June.

In the waiting room today, for the first time there were other kids that were there with what were obviously congenital conditions, not just the torn ACLs and broken wrists that we usually see. First was Austin, a boy around one with a blue body cast on after a hip reduction. He was there to get it off, which his mother pointed out was not a moment too soon, as he smelled pretty awful. Then there was Maria. Maria came over and introduced herself and her little brother, informed me that she was four, and invited me to get down on the floor and play with her while Peanut was getting x-rayed. Maria was wearing a halo, and her useless legs were bent up at the knees. She asked to be put on the floor from her wheelchair to play, and was as cheerful and happy a child as I have seen, truly delightful. She loved Peanut, and kept complimenting her pigtails, stroking them and rubbing her back and asking about her stuffed rabbit. She was a breath of fresh air in a place that has lately become a waiting room of my nightmares. I know I am not the only parent that needs a reminder that the main focus is having a happy, functional kid, so it is too bad Maria can't go around giving us a metaphoric slap upside the head.

So Is She Channelling Celine or Elvis?

In the car this morning:

Peanut: Twinkle, twinkle, yittle saaaaaaaaar, how I wonner what you ........ aaaarrrre!

Me: That was lovely, Peanut. Thank you for singing for me.

Peanut: Thank you, thank you very much.

Ouch Times Two

I've been meaning to write a post about where I've been (overuse injury in shoulder, aggravated by computer use, causing dramatic amounts of pain), but when the doctor describes what happened to you child's femur by saying, "It's like you took a can of pop* and crushed it from the ends, so it bulges out a little on the sides", one really doesn't have the mental energy.

The rule apparently is that you don't slide down a slide *with* your child. My mother is beside herself, even though it could have been any of us. Several people, including me, now have some vague memory of hearing this at some point in the past, but no one can remember where. Where the hell is the handbook for these things?

Peanut will be ok. She's feeling much better now that we figured out what happened and immobilized her leg with something that, thank GOD, is not a cast and is in fact removable for baths. Standard pain relievers of the kind you buy at the supermarket instead of the backstreets seem to suffice, and we go back next week to be sure that no other damage was done (i.e., the kind that would require surgical intervention).

I will be back soon. I am on my fourth job position in as many months as of tomorrow (though it is temporary, and I'll be back at the third place soon), and I haven't had time to really read email, much less blog. It's been a long few months, but I got asked to do something kind of cool with my blog next month, so I'm trying to get back to writing. I have also decided to attempt to do some writing that other people might want to say, "Hey, I'll vouch for this by putting it in my magazine, online or otherwise", so I have to pace myself, lest my right arm finally wrench itself off my body in disgust.

Two final happy thoughts about Peanut: When she watches the river otters at the zoo, she giggles continuously, as if being tickled. And she demanded peanut-butter waffles tonight, which she has never had but apparently sounded good to her.

*Yes, pop. Not soda, pop. I stopped saying pop when I lived in NYC, but I refuse to be dictated to by a bunch of NYU freshman anymore.