Bad Mama

December 14, 2008, 11:01 am
Filed under: Disability, Peanut, Uncategorized


This last week has been pretty eventful for Peanut.

On Wednesday, she and I got on a plane and flew to Philadelphia, for a visit down to Wilmington to A.I.  Dupont-Nemours Children’s Hospital and their arthrogyrposis clinic. First, however, we took a train in to New York City to visit with Uncle Carlos*. Our timing was pretty bad, though, as it was pouring rain and cold, so we didn’t get to do as much as we wanted to do.

We started out at the American Museum of Natural History, so she could see the dinosaurs. After seeing how big the barosaurus and allosaurus was in real life, she was not so keen on seeing more. So we wandered around looking at the animal dioramas, with a brief detour into the Eastern Woodlands Indians room. Then she was getting tired, so we hit up the gift shop. There she fell, cracking her elbow on the marble floor. It seemed fine, if sore, so we pressed on into the rain to Rockefeller Center, to see the Big Tree. She really enjoyed seeing all the giant ornaments and nutcrackers decorating the buildings nearby.

It was raining and gusting wind, so that was about all we were going to do. We walked over to Times Square (it makes reading “A Cricket in Times Square” more interesting for her now) to show her all the lights, and saw the Charmin public bathrooms, Carlos and I wondering  just how hard-up we would have to be in order to take a job dressing up as a giant roll of toilet paper and standing in the rain outside a bathroom. Then we took the subway back to the train station. Peanut talked to a nice young woman we sat next to pretty much non-stop all the way back to the station, and we went home.

The next morning was the Please Touch Museum. We didn’t get as much time there as we wanted, partly because of morning pokey-ness and partly because of poor signage and interstate road on-ramp accidents (not us, thank goodness). We did get to see  a whole lot of downtown Philadelphia, though. She was ecstatic to play in the Alice in Wonderland exhibit, and rode the carousel. Then we drove to the appointment.

One of the reasons we decided to go back to the clinic is because she needs new braces, and are not and have not been happy with the braces she has gotten here. Her doctor is very good, but somehow there seems to be communication problems between him and all the allied professionals, and nobody has ever been able to get braces made that do what they need to do or that anyone was satisfied with. So I decided that we were done dicking around and we were going to see the doctors and have them made there.

The other concern is related to the braces, and it involves her right foot, the one that was clubbed and has been operated on. Her foot is “collapsing”, the talus bone moving far out of place and her ankle rolling in. Her doctor here told us as long as it was able to be braced that he wasn’t concerned about it. But it seemed to be getting worse, and that answer just wasn’t good enough for me.

They took x-rays of her feet and an ultrasound of her knees. Her kneecaps are all right, not placed exactly where they should be but close enough. The foot x-rays showed the foot collapse, and the team was very concerned about it. They felt that without proper bracing she would need another surgery, and may need one anyway. I said we’d been told she probably would anyway, and there was a pause before they said, “well, that was usually the case.” It turns out that proper bracing in these kids can prevent the need for more surgery. And she hasn’t had proper braces.

They were kind of surprised when I said, “you make them, and we’ll come back for them”, but I didn’t know what else to do. They don’t seem to understand what she needs here. Her PT here says they are so used to seeing kids with cerebral palsy, which causes some similar issues but is NOT the same and can’t be treated the same way, so it is hard for them to switch gears. Regardless, she was casted and picked out the new colors for her braces. They will be very different than what she has now, in good and bad ways. They’ll be lighter, which is good, but they’ll have less flexibility, which is good for her bones but bad for her independence. I will be okay with it because, as one of the team explained, it will mean the difference between wearing a brace on that leg her entire life and perhaps not needing it after she is done growing. Pretty easy choice, in my mind. She also got a new hand splint to go on her left hand and help stretch out the finger that is pinned down to her palm. She will only have to wear it at night.

Oh, and one last thing. Remember the fall she took? Yeah, she was still sore when she woke up, and didn’t want to straighten out her arm nor turn her hand palm-up. How convenient we were going to be seeing orthopedists that day! A couple of x-rays later, and she is sporting a bright pink splint on her right arm. They suspect a break, but couldn’t see one, so she needs to keep it still for a week or so. Poor kid, shuffling around with braces on both legs and a big plaster splint on one arm. Let me tell you how much fun it was getting around the airports and planes on the way home with a too-small stroller and a kid unable to use one hand or climb stairs.

Peanut is a very good traveler, and was good pretty much the whole time, falling apart really only on the way home. The next time will be only a trip to Wilmington and back, which will hopefully be much cheaper and way, way less rainy.

*Carlos is not really her uncle, but one of my oldest and dearest friends. I was visiting him when I met Big Daddy, so without him there wouldn’t be a Peanut.


I admire her taste
November 6, 2008, 10:07 pm
Filed under: Peanut | Tags:

My daughter has her first celebrity crush. The crushee?

Rachel Maddow.

Yes, really.

A week or so ago, when my mother had the show on TV, Peanut asked to keep watching it. My mother told her that if she did, she wouldn’t get a bedtime story, because it would be too late. She said okay, and sat and watched.

On Election Day, before I went to work, I turned MSNBC on. Peanut came into the room and asked, “Where’s Rachel?” She was upset when I told her that I didn’t think she’d be on until later that evening.

I had her on last night, and again Peanut insisted on staying up to watch her, as she did tonight at my mother’s. I asked her yesterday what made her want to watch the show, or what she liked about Rachel, and she answered, “I like the way she looks. And the way she talks. I just like her.”

It is certainly preferable to a Jonas Brother.

St. Bad Mama
August 31, 2008, 1:06 pm
Filed under: Disability, Parenting, Peanut, Politics

People have been asking me what I think about Sarah Palin. Seriously, like random people in the street. The nice part of living in Madison is that you can talk to a random stranger and odds are that person is someone who is also counting down the minutes until Bush is out of office. The bad part is that they may be planning on voting Green Party instead of Democrat because “Obama and McCain are no different”. Whatever. Here, have some more weed.

Anyway, I don’t really know much about her, not being from Alaska, but I have one thing to say about some of the coverage. As you may know, Palin has five children, one of whom has Trisomy 21, or Down’s Syndrome. Because she is anti-choice, there has been a lot made of the fact that she did not choose to terminate the pregnancy of that child, and that is supposed to demonstrate her character.

You know what? I call bullshit. This idea that only certain kinds of people can parent children with disabilities is bullshit. It implies that only saints would want children who are “damaged”. I have said it before, and I will say it again, that despite the stress and worry that come with all the surgeries and therapy, y’all are lucky if your kid is half as great as mine.

There were plenty of times in the beginning where I wondered why this had happened to my child, that I was told that God had chosen me and I then didn’t think much of God.   But really, I dare you to find one grandparent on their deathbed who can honestly say they never once said, Why me? Why my child? about their kid at one time or another. She was my first kid, and I didn’t yet know how deeply and unreservedly you grow to love them, more each and every day.

Like her or don’t like her, whatever.  Just don’t think that she must be a good person because she chose to parent this child.  She’s an experienced mother, and she has money, and therefore is already in a better position to parent that child than many who have to make that choice. Because that’s what it takes, really, to make that decision: Knowing that you will be able to love your child completely no matter what, and knowing you have the resources to do so. If people really wanted to keep the number of people who terminated those pregnancies down, then they would advocate for more services for children and adults with disabilities, better mainstreaming of people with disabilities in school and employment, and more funding for research into the causes and prevention of congenital abnormalities. Because if people didn’t see the birth of a disabled kid as the end of the world because they’d grown up around those kids and knew that they’d be able to live happy lives as adults with access to the healthcare they needed, perhaps they wouldn’t be so afraid.

Somehow, I doubt Sarah Palin’s election to VP will go very far towards those ends. But I’m always open to being pleasantly surprised.

In case you were wondering how Obama feels about disability issues, see his web page on disabilities here. And then you can compare it with McCain’s … wait, he doesn’t have one. The closest he comes is under health care. Just for fun, compare Obama’s and McCain’s pages about Autism Spectrum Disorder. If I hear one more person say Obama is unclear about how he is going to change things, especially compared with McCain, I think I am going to slug them.

Adaptation in action
August 20, 2008, 7:54 am
Filed under: Peanut | Tags: ,

This weekend Peanut went to a backyard birthday party at the home of one of her friends. These things are generally a mixed bag for her, as she cannot walk well on uneven ground and usually the kids are careening around too roughly for her. However, this time was a bit different.

I was home taking care of Squirt so I hear this second-hand, but as recounted, Peanut was laying on the ground, singing “I am the Princess of Scotland”* while the other kids? They took turns jumping over her. This was apparently an enormously fun game for all involved. She also led the singing of “Ring around the Roses”, as children danced around her.

She is so very, very cool.

*The other night she asked me to tell her a “wishing story”, wherein I tell her the story of a wish coming true. Her wish was to visit a castle. Since we are of Scots ancestry (among others), I told her we visited a castle in Scotland and discovered that we were the true heirs to the throne and the real owners of the castle, making her the Princess, and apparently me, Carrie, Queen of Scots. But with a better ending than the last one.

Daily Peanut
January 9, 2008, 7:28 pm
Filed under: Peanut, Squirt

I explain to Peanut that I can’t eat peanut butter because it makes Squirt sick when I do (along with dairy, soy, and something else involved in corn chips and salsa). I hand her her plate of bread and peanut butter, and she sings to herself, “All the peanut butter for me, ’cause I’m not nursing a baby.”

Birthday gift
January 6, 2008, 12:54 pm
Filed under: Parenting, Peanut

Last night was my family birthday dinner at my mom’s. Peanut had been excused and was in her nightgown, playing in the living room. She suddenly appeared at my elbow and announced to me, “I loooove having a bare butt all the time at a birthday party. It’s very nice.”

She then proceeded to turn away from the table, hike up her nightie to show her bare behind, and start shaking it at us while singing a little “doot dee doo” song.

Obviously, she’s feeling better.

January 4, 2008, 7:51 pm
Filed under: Parenting, Peanut

Peanut’s diagnosis: Clostridium Difficile Colitis

Wow, does that suck. She’s doing better now, and will start new antibiotics to treat it tomorrow. She spent several hours in the ER, and got an IV with morphine to help her out. She’s hilarious on morphine, btw.

In order to facilitate the IV placement, a bribe was required. And after seeing my baby in as much or more pain as she’s ever had after any surgery, and telling her she would have to get a needle into her tiny little hand with its funky AMC anatomy, I caved and sent Grammy to the store. This made things much more tolerable. She named the red panda that comes with it after the ER doctor, Mike.

Part of her morphine hilarity was her insistence that her father preside over a wedding of her and Barbie. Because she loved her so much she had to marry her. She had a squeaky, hoarse voice from a day’s worth of crying, and she was so serious in reciting the vows. Big Daddy whispered to me that he was very sorry he would not get to be there the first time she ever gets high.