Um

My blog is in Google's top ten search results for "boning mama". Whoever you are that searched on that phrase and got here, please don't come back.

And to the person searching for "closeups pictures on baby's being born from skinny mothers", this just goes to show that Google doesn't know everything. I don't think I want you back here either.

Overindulgent Mama

Peanut is officially spoiled. I will say that it is mostly T.'s fault, as she is not allowed to fret in his presence for more than a few seconds. It is my fault also, as I often feel that she is going through enough crap that I don't need to make her life any more difficult by, say, making her wait for a full minute while I go to the bathroom before nursing her. And I have no problem with this kind of parenting right now, with these huge uncomfortable casts on her legs (remind me to take a picture and post it--they're bright pink) and all sorts of drugs in her system, she's bound to be a little whiny, and deservedly so. But...

She has decided we are here for her entertainment, and that we are to be on call at all times. She will be lying on a blanket next to me, playing contentedly with the remote control or some such thing, and suddenly begin wailing at the top of her lungs, throwing the toy or valuable electronic item aside. Afraid that it is the muscle spasms that she is being drugged to prevent, I immediately try to console her. She thrashes away, howling, pushing me away from her, tears rolling down her cheeks. I desperately try to distract her with a song, my cell phone, anything. When something I put in front of her catches her interest (more than likely something expensive and fragile), the tears cease immediately, like the flip of a switch. Then I know I've just been played. It is just often enough that it is the muscle spasms that I can't just tell her to chill out. And this new cry sounds very similar to her pain cry, so I can't tell right away what the problem is.

This is new for my child, who was never much of a screamer. She's always been remarkably quiet and laid-back, so this behavior is a complete change. As I said, I think that what she is going through right now entitles her to some special treatment, but Lord, it is going to be a long six weeks if this is the kind of treatment she is expecting. Because after these casts come off, this has got to end. I'd prefer it end tomorrow, but I just don't think I'm up to the task. The last time her casts were cut off, her legs were covered in bruises and sores from moving inside them, and that was when she didn't move much. I don't feel I can risk just letting her cry for a while in the belief that she's just mad about being momentarily bored. Sometimes she is truly in pain and needs her mama. So if she ends up being a bratty toddler, you know why.

Enough Already

I am so tired of having to write ranting letters to the clueless. Did you know that according to ABC news, if you are adopting internationally you are probably racist? If I had a link to their story, I would post it. Suffice it to say that I sat through their entire piece on how people from other countries are adopting our black children with my mouth hanging open in astonishment.

I am still so mad I can't write clearly, so I won't try anymore. Just had to let out a little more anger after the nice long letter I wrote them tonight, asking that they please get a fucking clue. Except without the swearing.

Is It Just Me...

or does looking at your site statistics make anyone else feel like a stalker? I know where people work, what operating system is on their computer, how long they stay at my blog, what pages they look at, what search they did on Google to find my blog and what blog they came from to mine. Of course, I don't know their names (usually), but still, it just seems weird to me. Of course, the fact that I have some need to know these things at all is pointing to some severe insecurity, I imagine, so I guess it is just one step over to stalker territory.

Yes, I am very tired, how did you know?

Fry mah hide!

First, the funny:

I want to thank Karen at The Naked Ovary for this link. It was exactly what I've been needing, other than a full-body massage from Brad Pitt. I prefer my site in Redneck.

Peanut is doing really well. She's asleep a lot, but you would be too if you had her drugs. When she's awake, she's almost back to her normal self. Not quite as happy and silly, but at least going through the motions.

What the doctor found was less muscle in her thighs than he had hoped for. I am starting to learn with this doctor that I need to ask him if the prognosis he is giving is what he expects or what he hopes. Anyway, people with arthrogryposis don't have as much muscle as they should, because their muscle is replaced with fibrous tissue, kind of like scar tissue. Their cellular makeup is different, and that is why clubfoot treatments work differently on them than on kids whose only problem is clubfoot, for example. He's not sure how this discovery is going to play out in her development, but he wants to maximize her chances, and has changed her treament plan.

Instead of back-to-back surgeries and three straight months of being in casts, she is going to have these long-leg casts removed after six weeks and then get intensive physical therapy for her legs to build up what muscle she has. She will have her hip surgery within six to eight months, because when that cast is on one of her legs will have to be in the cast too, locking up her knee and risking it getting stiff. The more strength and flexibility she has in that leg and knee the less it will be affected. I am somewhat relieved, honestly. I was so dreading three months of sponge baths (and I think we all remember how much she loves those).

We're getting through it, and she's adapting. Thanks for everyone's kind words. I am much more concerned with an acquaintance's son, a twenty-nine-week preemie who just had his second heart surgery. Hang in there, Carson.

Update

She's doing much better, and might even get to come home tonight. Yay!

She's Out

She's doing ok. We've had a little trouble controlling her pain, and there are some findings to discuss from the surgery and some changes in her treatment plan that I'll discuss later. But overall she's doing all right. I haven't had a break all day, though, so I'm going to rest now.

This Hospital Rocks

...because they have free high-speed internet in the waiting room!

Peanut is an hour and a half into the surgery, and we've given up trying to sleep on the slightly comfortable couches, mostly because there is another woman nearby who is asleep and snoring. We have a pager that is like the kind you get at busy restaurants and bars--like a coaster with lights and vibrations--that will go off when there is an update.

She was very crabby this morning, after having woken up at five. Normally when she does this I just nurse her back to sleep, but we couldn't this morning, so she let us know how unhappy it made her. This being a teaching hospital, we were visited by the surgeon, his resident, his resident's med student, the anesthesiologist, the anesthesiology resident, the O.R. nurse, the pre-op nurse, and the "child life" specialist before the surgery. For those of you not personally acquainted with my delightful daughter, please understand that the sight of my brother, whom she sees about once a week, tends to send her into hysterical tears because she doesn't know him well enough. So this parade of strangers didn't help matters at all. (I know people are concerned about the possibility of having students giving her anesthesia. What happens here is that the attending physician puts her under, and then the resident, who is experienced, monitors her until it is time to bring her out. The attending then comes back in to do that, and during the surgery he monitors two rooms. I'm ok with this).

I was writing a light and funny post in my head much of the morning, but it is now lost to me. I'll try again later.

Sappy, But In A Good Way

The mother of another little girl with arthrogryposis emailed me back after I emailed her. Her signature had this quote:

God said, "Yes, there is a woman I will bless with a child 'less than perfect'. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step 'ordinary'. When her child says 'Momma' for the first time, she will be present at a miracle and know it! I will permit her to see clearly the things I see -ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every day of her life because she is doing My work."
--Unknown

I certainly don't think I am to be envied, and I would never presume to be doing the work of God despite what I may hope (I am sure God would prefer Peanut be bathed more often), but I like this thought all the same. I'd like to think I would never take these things for granted if she didn't have AMC, but I have to admit that the diagnosis would have been far more devastating if it hadn't been contrasted with not having her at all. I don't believe that God made her this way to teach me something--I just don't think that's how it works. I do believe that this is an opportunity for me to grow, and to use my big mouth on behalf of others for a change. I hope that she'll be proud of me someday.

Birthday Cake

She liked her cake.

I'm ok. Things resolved without further medical assistance. Yeah, probably has something to do with stress. I'm still trying to catch up on my sleep, and haven't been online much. I don't expect to be on much in the next several days. I'll update after her surgery for sure. Thanks for being concerned.

Ouch

We're still here. I just haven't been online much. And today, after going to the doctor with severe stomach pains, I was told my intestines looked "abnormal", but he didn't know what was wrong. Trust me that you don't want any more details. I will be back soon, I hope...

A Letter

Dear Insurance Company,

I am requesting that you approve payment for my prescription for Retin-A, despite the fact that I am over 25. I promise you that I am not using it for wrinkles. I need it because my daughter has developed a habit of scratching at every freckle and blemish on my face while I nurse her at bedtime. I am beginning to feel like a chimp being groomed. While yes, I could crane my neck away, I would then also lose the gentle stroking of my skin that she likes to do when I have no visible blemishes and she is bored with the freckles. Since my blemishes are due to a hormonal condition that made getting pregnant with her an unlikely, thought pleasant, surprise, I feel that I should qualify for an medical exemption to your rules, especially since she doesn't stop doing this I will go insane and you'll have to pay for all those meds and restraints which are far more expensive. Thank you.

Sincerely, Peanut's Mama

Caught You!

My mom has a blog now too.

I join the ranks of Elsewhere and her mom. Maybe if you're nice, Mom, I'll tell you about Technorati.

Now you have to keep writing, nyah-nyah-nyah.

A Leap

So it turns out that I'm going to be "facilitating" a group for parents of children with disabilities at a local store that caters to new and expectant parents. I am very excited about it, though I find this amazing, considering who I am and who I've been.

I was raised by a tolerant mother and a bigoted father in a really bigoted small town. Despite all the pressure, I grew up believing that there wasn't anything wrong with being gay, that there were no inherent differences between the races, and that women could and should do anything that men could do. I'm not perfect--no white heterosexual ever really is, I don't think-- but I really try. The issue of disability never really came up. I look back now and shudder. I was perfectly nice to the boy in school with spina bifida who needed crutches and braces for walking. But the "slow" kids? I had no use for them, though I was no worse than any of the other kids (not that that is an excuse). My best friend grew up into a social worker working with adults with developmental disabilities, and had to force me to go along with her to group outings, because the people she worked with made me uncomfortable. I still don't know why...fear, maybe? The fear that something could happen to you, or to someone you loved? But her whole point in bringing me along was to show me that these people were happy, had fulfilled lives, and there was nothing to be afraid of. I couldn't deal with it. I couldn't deal with a friend I had with a degenerative back disease that would leave him in a wheelchair in a few years. I thought having a disability was something that was worth ending your life over, and the idea of having a child with a disability even worse.

Then I had Peanut, and the knowledge that she would be considered even partially disabled hit like a brick. I still have to remind myself that she will have enough limits placed on her by others that she doesn't need me to add more, with my stereotypes and fears. I thought I was getting over this, had become more enlightened and left a lot of that ignorance behind, when something happened recently that made me feel ill.

T. and I were having dinner out a few months ago. I saw this woman, by herself, sit herself down into one of those electric carts used by people with mobility issues that don't need wheelchairs. She pulled up to our table (it was near the door), and started the uncomfortable chatting that strangers sometimes start in enclosed spaces like buses or subway stations where you can't get away and all you can do is nod politely and hope they find someone else to talk to. I sat hoping she'd just go away so we could get back to our meal. Watching her pull her coat on and maneuver out the door, I realized that she was very stiff, and that was probably why she was in the cart. And then it hit me: This could be Peanut someday.

This woman was alone, eating dinner in a rowdy tavern. I am fully aware that there might be lots of good reasons why she was alone, but I thought to myself, if she were dressed well and standing there, saying the same things to me, would I have been so uncomfortable? The answer was No. She was complimenting us, for crying out loud. She was saying to my husband what a lovely date he had, how we looked very happy together. She said I had beautiful eyes, and that she hoped we enjoyed our meals. I assumed she was crazy because she was in that cart, and for no other reason. Had she been standing there, I would have assumed that she was waiting for someone. I would have been embarrassed by the praise, but probably come away from the encounter feeling good. But I was uncomfortable with her because she had a disability. And someday it could be my daughter, having people around her shuffle around and try to avoid her eyes. And it made me ill not just to realize this, but to realize that it took having a daughter with a disability to recognize this about me, about so many other people.

This is why I don't usually jump on people when they say things to me that are hurtful when it seems to come from ignorance rather than ugliness. Because I know that I'm no different. I know I have said and done things, thinking I was being perfectly enlightened, that were awful. I am thankful the people I said them to were kind enough not to jump down my throat, though I wish they'd educated me a bit more. But I imagine it gets a bit tiring to do all that educating all the time--I know I'm starting to reach my limit.

My friend Dana once talked about the problem she had with people who told her they only had problems with "ghetto" black people, just like they had problems with "white trash". The problem is that while she might be one of the "good" black people in their eyes because they know her, she is just another nigger to people like that who don't know her. While that woman was some crazy lady to me, she was someone else's daughter, probably loved just like Peanut is loved by me. The fact that I couldn't get that until I was thirty-one years old is appalling to me.

So me being in this position is interesting. I imagine I am not the only parent who has had this kind of epiphany. Maybe because I've surrounded myself with such truly non- judgemental people since I moved out of my hometown I am holding myself to an impossible standard and need to give myself a break. I don't think so--my daughter will never get a break from who she is. I do have to remind myself that this is all a process, and the important thing is that I'm learning as I go along and I am trying my best.

I'm sorry, I'm still not writing anything funny. Maybe next time I'll try a knock-knock joke or something...

Searching

For the person who keeps coming up with my site while doing various thanataphoric dysplasia searches, I truly hope it is out of idle curiousity that you are searching. If it isn't, I want you to know about Peanut's geneticist, who specializes in this and other skeletal dysplasias, and had one patient with it who recently graduated from high school. He's one of the only children to survive that long, but if you need answers about what this is truly about and want someone to give them to you, email me and I will send you his contact information. He consults worldwide, and is one of two men in this country with this level of knowledge. Good luck.

The Big Birthday

It is late, and I am tired. We had a wonderful day, full of friends and family and a living room full of babies. Peanut handled everything with aplomb, despite being slightly cranky from teething. I'm just very glad I only have to do this once a year.

I am too tired to write much about her tonight, but there is something I want to say. Before I had Peanut, I thought I understood what it meant to love your child. I loved my friends' children, right? The rush of love I felt the first time I met my goddaughter was amazing and sudden, and I knew then I for sure wanted a child. I loved my husband more than I could put into words. But it was scary, because of all the ways your life changes. How could it be worth it? Maybe most people weren't as wedded to their lives pre-baby as I was, and that's why they said it was worth it.

I didn't understand. I couldn't have. There is no feeling I have every felt that is like the love I feel for my child. Not even close. You think you love your spouse, you think you love your pet like a child. And you do. But you would have to magnify that love a hundred times over to begin to get in the neighborhood. It is something primal, something that is beyond explanation. It doesn't seem like you lost your life so much as you gained a new one. It is hard to imagine how it is okay to change your entire existence when you can't truly understand the emotion that is supposed to be the reward for that change. Maybe other people don't feel like this. Obviously some people don't. But I think that most parents can identify with what I'm saying. It isn't that we don't miss lazy Sundays with coffee and the Times, we do. We just find what we get in exchange more rewarding, and it is something that we never experienced before we became parents.

Darling girl, you are the light of my life. I can't imagine my life without you anymore than I can imagine it without the sun coming up every day. You are all that is right and beautiful in this world, and I am the luckiest woman in the world to be your mother.

A Great Day, Remembered

That's her father behind her, touching her for the first time. His hand covered her whole head.

So last year at this time, T. was standing behind me with his arms wrapped around my belly, swaying while he sang and "danced" with his daughter, for what he thought would be the last time. I read her a book, and we lay there in my hospital bed with his head on my belly. Neither of us slept very well that night.

They'd warned everyone about what was going on so they wouldn't come in all cheery and say things like, "are we excited? We're having a baby today!", but the nurse who came in to put in my IV line still cried when she heard what was going on. T. started getting physically ill from the stress, and my OB actually wrote him a prescription for an anti-nausea pill, because he couldn't even stand up. The doctor in charge of the NICU came in to talk to us about what was going to happen. They would have a team in the OR, along with the geneticist. If she stayed alive long enough, the geneticist would assist in examining her to determine whether she had a chance to improve. If not, she would be given morphine to ease her suffering, and we would get to hold her. If he thought she had a chance, she would be taken to the NICU for further evaluation. He told us how the day that we were told about Peanut's condition, another little girl was born there with hypoplastic lungs (the main birth defect that would be lethal to Peanut), and died a few days later. There was no known reason for her condition, and her parents knew there was some kind of problem, but not exactly what it was. Why he told us this, I don't know. Maybe so we understood that we weren't the first parents to face this, not even the first in the last week in that hospital. Her obituary was in the paper that very day. Priya, sweetheart, I will never forget you. I still don't understand why Peanut lived and you didn't. I wish so much that you would have, that your parents and brother didn't have to lose you.

I refused the medication they wanted to give me after the birth to bring my blood pressure down, because its main side effect is extreme grogginess. My doctor said she had to warn me of the risk I was taking, but she totally understood. I wanted to be awake for what might be my daughter's only time on Earth. I was finally taken down to the OR, after a final prayer with the pastor. The injection for the spinal block hurt for three seconds, and then nothing else did. The sensation was very strange--I could feel my legs being touched, but I couldn't feel any pain. The room was full of women--the doctors, nurses, and techs were all women, and that made me happy. Two men appeared, but they were from pediatrics and stood in the corner. The anesthesiologist was wonderful, explaining everything that was going on to us. T. bent down and we whispered a prayer together. I had spent the last week visualizing her ribcage growing wider, and her lungs growing larger and flexible. Now I concentrated on her using them to take a deep breath.

Did she ever. They pulled her legs out, and her head was kind of stuck. One big tug, and she was free and let out a scream I could hear above the beeping machines next to my ear. And she kept on screaming, mad as hell. I could hear the grunting respirations, but they were breaths, she was breathing, all on her own. I knew, then, that nothing was wrong with her. She'd be fine.

T. went off to the NICU with her, after they gave me a quick glimpse of an angry red face with a lot of dark hair. My friend Dana came in while they sewed me up. They broke the rules for us--normally they only allow one person in the room with you the whole time. Dana couldn't stand it and peeked over the curtain to see what it looked like, then looked down at me and said, "now we have to always stay friends, because I've seen your insides". After they were done, they took me into the recovery room, where my mother waited for me. Someone came in then and gave us the news: Peanut was breathing on her own after needing a little oxygen for a few minutes (like many babies born by c-section, they have fluid in their breathing passages that didn't get squeezed out as in a natural birth, so they are a little congested). She looked "fine", and they couldn't see anything life-threatening at that time. I was too out of it to demand the radiologist come in and explain to me right then and there what the hell happened. I acquiesed to getting the med for my blood pressure, and I don't remember much else that happened for the next 24 hours, except threatening to get up and walk out of the recovery room as soon as I could feel my feet to see her if they weren't going to let me go see her, which they weren't. My condition was very dangerous, and my blood pressure wasn't coming down fast enough. I demanded to go, saying that if they thought it was high now...

They wheeled me in on a gurney and I got to look at her for a full minute before they took me away. I didn't notice her legs or anything other than her face. I couldn't believe she was real, that there really had been a tiny person living inside of me that was now out and *breathing*. I still have to watch for her breaths, or touch her, to make sure she is still taking those breaths, while she sleeps and I have no idea when that's going to end. I got to hold her for the first time the next day. She weight four pounds, thirteen ounces at birth, and the next day was four pounds, seven ounces. She was eighteen inches long, and her head was 35 centimeters around (why they never translate that measurement into inches, I don't know). At some point, the doctors pronounced her having arthrogryposis, and that's it. Oh, and a blocked tear duct. No one could explain to us the discrepency between what was seen on the ultrasound, and what she actually was born with, and no one has yet.

If you are still reading this, I am impressed. Tomorrow we are having a little birthday party for her with our friends from the mother/baby group. Her granddaddy is in town from Atlanta too. I'll write some more tomorrow on what she is like now--wonderful, of course, but in what specific ways.

They Don't Discuss This In The Breastfeeding Handbook

Picking at the zit on my chin while you nurse is not especially endearing, Peanut.