I bought Peanut some pajamas with little ballerinas all over them, with a shirt that says "Future Prima Ballerina".
There is no way I could have done this even a few months ago. But looking at those adorable pjs, I came to a realization that perhaps I should have come to a long time ago:
It isn't that I want her to be a ballerina, it's that I want her to feel graceful and beautiful when she moves.
It isn't that I want her to be a fighter pilot, it's that I want her to feel powerful and competent and able to do things that some men think she can't.
It isn't that I want her to be a soccer star, it's that I want her to feel strong and energetic and comfortable with her body.
It isn't that I want her to climb Mt. Everest, it's that I want her to be able to enjoy the outdoors and appreciate nature.
It isn't that I want her to be a beauty queen, it's that I want everyone else to recognize how gorgeous and talented she is.
I can help her with most of those things. I can help her to feel good about herself, I can feed her healthy foods and get her outside and active, I can encourage her to develop into the kind of person she wants to be. I can't fix her legs, but I can tell her how proud I am of her, and how confident I am in her strength, and how much I love her.
Sunday, July 31, 2005
I bought Peanut some pajamas with little ballerinas all over them, with a shirt that says "Future Prima Ballerina".
Posted by Carrie at 10:05 AM
Thursday, July 28, 2005
She's fine. In some pain now that the hip is moving, but that will ease over the next couple of days. She no longer smells like a zoo or appears to be shedding her shell now that she's had a bath. She isn't moving the right leg yet, but I am hopeful that as the pain lessens that will change. No more surgeries are scheduled for now, and she doesn't have to see that doctor until November, when he will make sure her hip is still in place and take a baseline x-ray of her spine (AMC patients often develop scoliosis, although we don't think that will be an issue with her).
After she stops hurting, the swimming pool awaits!
We are going to stay with Carlos. I put the quotation marks around his name after realizing people didn't realize he wasn't actually Catie's uncle--more like unofficial godfather. He's one of my oldest friends, and I have stayed with him plenty of times, including the time that led to me meeting Big Daddy. And considering the old apartment, I was not sure his new one would be big enough or appropriate for keeping Peanut there. He has assured me that it is, and I believe him. I wasn't implying he isn't nice to stay with--he is, and I had planned to come back and visit him another time if we didn't stay with him this time--just that I might have more time to relax and be pampered if we were in a hotel. Despite--or perhaps because of--having lived in New York City, I still have this fantasy of being there with some actual money and enjoying all the fancy stuff money can get you in that city (not that I currently have much actual money, but I have enough to eat which is more than I can say for when I lived there). But, as Carlos is planning on babysitting Peanut while we attend the wedding (it is smack dab in the middle of her nap, which is why she won't be coming as it wouldn't be fun for anyone), it will certainly be easier for all of us not to be shuttling back and forth between a hotel and his apartment.
Posted by Carrie at 7:19 PM
Sunday, July 24, 2005
Thursday, July 21, 2005
Ok, I have this question. The family and I have to travel to New York City in September for a wedding. This will be the first family vacation we have taken that didn't mean staying at a relative's house nor involve Big Daddy working in years. He and I had one night at a B&B for Mother's Day, but other than that, nada, because he used up all his vacation time on the birth and Peanut's surgeries. So, with that in mind, we have a choice to make:
*We can stay with "Uncle" Carlos, who has graciously offered us his little extra room in his new apartment in Park Slope. This would leave us with money to spare, as well as good company. It would not, however, lead to a whole lot of comfortable sleep and amenities, lovely as the new place is (although it is steps away from Prospect Park, which might be nice for walking with Peanut).
*We can blow the budget and stay in a swanky hotel, complete with 300 thread-count Egyptian cotton sheets, soundproof windows, and Molton Brown bath products. While it would not be quite as expensive as it sounds, it would likely not leave me any extra money for fabulous new shoes. It would be convenient for other sight-seeing/reminiscing, and be, well, more like a vacation, even with the crib in the room (we are talking suite here, so we won't necessarily have to go to bed when Peanut does)
I am leaning towards the Uncle Carlos option, not the least of which is because of the company, but mostly because what good is it for me to stay at some fancy hotel in Manhattan near Saks when I can't buy anything there? On the other hand, we are talking about a queen-sized bed with soft sheets and room service and possibly celebrities throwing cell phones in the lobby. And if I shop very, very carefully I am sure I can find something good to wear. It doesn't actually have to be currently in fashion because after all, I am from the Midwest and no one will expect me to look chic so anything even moderately cool will work. No, I am not asking Big Daddy's opinion, because he will end up going with whatever I want because I will wear him down if he disagrees and he knows it.
Did I mention the bride used to be a fitness model, and now has a doctorate in neuropsychology? You'd better believe I am dieting so hard that afterwards my metabolism will grind to a screeching halt to keep me alive, but I don't care as long as I don't look so very well-fed on that weekend.
Posted by Carrie at 1:27 AM
Sunday, July 17, 2005
Are You A Bad Parent?
At first, I thought this was a satire of militant attachment-parenting people.
Edited to add: I forgot to say I got the link via the comments at Chez Miscarriage. They'll be gone soon, but I want to give fair attribution.
Posted by Carrie at 6:50 PM
The weather has gotten completely unreasonable again, and so we are stuck inside, and it is too hot to be on the computer much. I had to brave the oven-like heat for this, however. This is what is getting us through these weeks where I can't set foot outside with Peanut lest she melt inside the body cast. This is the handiwork of my stepfather, Bob, his buddy Larry, and their friend Jim's very expensive saw. They made Peanut a chair that can hold her sitting upright and a table that curves around her so that she can reach everything, even though she can't bend at the waist. Previously, the only way to have her sitting upright was to have her straddling my leg. That's right, I had to hold her ALL DAY LONG, and attempt to figure out what on earth it was that she was pointing and grunting for me to pick up and give her. As you can imagine, she is much, much happier like this. Thanks, guys. You have no idea how much you have improved the lives of both of us.
Posted by Carrie at 11:28 AM
Monday, July 11, 2005
I live in a city where not only is it possible to see a white man with dreadlocks every single time I go out of the house, but more likely than not he wearing a tie-dyed shirt and is carrying bongo drums. In fact, I think I would find it surprising to see one without the drums.
Posted by Carrie at 10:36 PM
Sunday, July 10, 2005
Just experimenting with HTML and color. Not asking for opinions yet, as I am not done, but if you particularly like something, feel free to say so. I know that the countdown ticker at the bottom is cheesy, but I don't know how to make my own quite yet so there you go.
Posted by Carrie at 10:26 PM
Saturday, July 09, 2005
Friday, July 08, 2005
So, if I can figure out where to send the money, anyone want to chip in some donations for baby Manuel in Peru? I doubt he has access to all the outside therapy and help that Peanut does, and as a parent that would drive me crazy. It's hard enough to have a child with moderate AMC with access to the best medical care, doctors, therapy, and equipment money can buy. Though it appears he does have good medical care at the moment, in a country where over forty percent of the population earns less than two dollars a day, the continuing care he will need is probably not available to him. Anyway, it's an idea. Anyone want to join in?
And from John Kovalic's site, via Making Light:
To quote an old Londoner who lived through the blitz and got caught up in the Canary Wharf explosion: "I've been blown up by a better class of bastard than this!"
We're with you in spirit.
Posted by Carrie at 7:29 PM
Here's a copy of the letter I sent to the March of Dimes, so you can see there is more to me than just Fuck You.
To Whom It May Concern,
I am the mother of a child with arthrogryposis multiplex congenita. I
recently came across an news article written by a Reuters reporter that quoted Richard Leavitt, your director of science information, regarding a
boy born in Peru with arthrogryposis. "It's very rare that all four limbs
should be affected,", is the quote in the article, which appears to be the
basis for the idea that this is a newsworthy story. Furthermore, the
reporter, Robin Emmott, goes on to say the child has been "dubbed the
lobster baby" because of his congenital condition, though there was no
indication of exactly who came up with that name.
I believe that what Mr. Leavitt was referring to was the fact that amniotic
banding rarely involves all four limbs, which is what appears to have
happened in this case, while as I am sure that he is aware, arthrogryposis
is most commonly found in all four limbs. I furthermore believe that he
would not support his statements being the basis of a news story using such
a derogatory nickname. Nowhere in any research that I have done have I come
across an reference to this nickname, and it appears to be either an
invention of the reporter or a local nickname for the child. This child's
father is already refusing to acknowledge him, according to the story, and
the headline and story as written only help reinforce his decision, as it
presents the child as if he were a sideshow exhibit.
I respectfully request that Mr. Leavitt or someone from your organization
contact Reuters and this reporter and protest the inaccuracies and
sensationalist tone of the article. It has been disseminated to several
other major news organizations. I can't imagine what some child or parent
searching for information about this condition will feel when they run
across this story. I have had seventeen months to get used to the idea that
my child has a rare disabling condition, and this was a shocking and
humiliating surprise. I have already written Reuters, and have received no
response. I will be writing them again, asking for either an amendment or a
retraction, as well as an apology. The article in question can be found at
www.reuters.com, in their science section for July 1, 2005. I am not
including the direct URL because it is very long, but would be happy to if
necessary. I thank you for your consideration in this matter.
Posted by Carrie at 7:36 AM
Wednesday, July 06, 2005
So with all the stupid people I almost forgot to mention that today I have been married to Big Daddy for eight years. EIGHT YEARS, PEOPLE. That's more time than he spent getting his bachelor's degree. He is spending this day in Boston fixing some doctor's expensive piece of medical equipment. He said he finally told one tech that today was his anniversary, and she felt sorry for him, but not sorry enough to say, "Go home to your wife! This silly hunk of silicon doesn't matter when it's your anniversary!" Considering he was once fired from a job on our anniversary, I suppose I shouldn't be too upset.
I was feeling all warm and fuzzy about the day until I discovered that today is also Dubya's birthday, meaning now I will always think of The Evil on my anniversary. Big Daddy then pointed out that our glorious marriage has redeemed an otherwise dark day in history, so I felt better, and now you know why I married him.
Posted by Carrie at 8:13 PM
I have yet to receive any sort of response from Reuters, much less an apology, but I did receive this, after writing to the March of Dimes because their expert was quoted in the story:
... Terms that liken human
malformations and other anatomical abnormalities to features of nonhuman
animals are less commonly used now than in the past, but still not everyone
realizes how offensive most of them are. I will make this point to Reuters
shortly, as I'm not happy having the March of Dimes or myself associated
with such tabloid treatment of the family's misfortune.
Director of Science Information
Office of the Medical Director
March of Dimes Birth Defects Foundation
They're getting another donation from me.
Posted by Carrie at 5:33 PM
Tuesday, July 05, 2005
It's been linked to all over. "Weird news" sites too. How do you teach your child she's not a freak when respected news organizations the world over seem to disagree?
I don't have the energy anymore to write to every place that picked it up, but I will try again tonight.
Posted by Carrie at 1:44 PM
Sunday, July 03, 2005
Rare 'Lobster' Baby Born in Peru
By Robin Emmott, Reuters
LIMA, Peru (July 1) - A Peruvian woman has given birth to a boy dubbed the "lobster baby" because of a rare condition in which his arms and legs are deformed and wrapped like claws around his body, doctors said on Friday.
One-month-old Moises Chavez, who was brought to Lima this week after he was born in Peru's central Andes, is one of only a few babies worldwide born with the defect in all four limbs, said Dr. Luis Rubio, who will lead the baby's long treatment.
The condition, known as arthrogryposis, or curvature of the joints, is found in one limb in about 1 in every 3,000 births in the United States. But experts in birth defects said Moises' situation was much less common.
"It's very rare that all four limbs should be affected," said Richard Leavitt, Director of Science Information at the U.S.-based National March of Dimes Foundation.
Rubio told Reuters that the amniotic bands within the mother's amniotic sack got tangled up around the fifth month of pregnancy, wrapping the baby in a mummy-like position and preventing his arms and legs from growing.
"His brain seems to be fine and his life's not in danger, so our goal is to give him the use of his hands and arms," Rubio said. "I'd love him to walk, but I just don't know," he told Reuters at the hospital run by Lima town hall where Moises will be treated.
Dark-haired Moises, who weighs 5.5 pounds (2.5 kg) and is 13 inches (33 cm) long, cries and reacts to sound but his leg bones are bent at a 90-degree angle from his body, while his hands are distorted outward as his tiny elbows hug his chest.
Moises' mother, Marisol Chavez, 21, appealed for aid when he was born in the Andean village of San Jeronimo, 250 miles east of Lima.
"I hope he gets better. My wish is he can play and run with the other children in the street," said Chavez.
Moises' grandfather, Rodolfo Trinidad, 65, said the father has refused to recognize the baby. "He says it's not his, he's horrified," Trinidad said.
Rubio said funding for the treatment, which could last years, would initially come from the Lima town hall, although he may have to look for aid from abroad at a later stage.
"We need to do tests first. I've only had the baby in my care for the past 24 hours," Rubio said.
Rubio is also treating Milagros Cerron, dubbed the "Little Mermaid" because she was born with her legs fused and is one of only a handful of babies born sirenomelia, or mermaid syndrome who has lived more than a few hours.
Lobster baby? Fuck you, Reuters. My child is not a freak show, and neither is this poor kid. His version of AMC is more severe than most, but that doesn't make him a fucking lobster baby. And your information about AMC is wrong anyway.
If you want to let them know what you think of this habit of "dubbing" children with "cute" names, you can go to their Contact Us page and tell the editors what you think.
If this post is showing up twice, I apologize, as the first one was up and then disappeared.
Posted by Carrie at 8:08 PM