I'm feeling anxious about the new baby today. This is the week that it's fingers and toes should separate, assuming it has any. Next week we'll have another ultrasound--the first one where we play Lets Count The Bones.
I'm terrified.
I don't know why it's upsetting me right now. Especially since fingers and toes are actually the smallest part of our worries. Weird, to live in a world where we consider fingers and toes to be luxuries. Much worse if it's major bones or entire limbs missing. The pelvis. The risk of cleft palate (no one in the family has it, but it is associated with the general disorder). So very many bones that could get lost or stunted along the way...
And I've kept rough track of the baby's development--not like I did with you, though. With you, Daddy and I were excited to read every day what exactly we were growing. I never really spared a thought that something might not grow correctly for you. And as this new baby has gone through its early development, I've tried to...well, I never know what to call it. "Praying" is definitely the wrong word, and "meditating" is still off the mark. Well, whatever you call it, I've done it while the baby is (hopefully) growing arms and legs and all its major parts.
So why the little freak-out about the fingers and toes? Such tiny details...
Every now and then the relentlessly hopeful image of ten fingers and ten toes bounces through my consciousness. I never let it get far. I don't know if it feels like I'd jinx things or that I'd somehow be being ungrateful that thus far this has been a very healthy pregnancy (fetus-wise, that is. Been a bit rough on Mommy). Slaying that thought the instant it arises is the only way I feel "safer." In that hollow, whistling-in-the-graveyard pretend-control way.
I'd say to keep your fingers crossed, but I can't decide if that's heartrendingly optimistic or horrifically dark.
Showing posts with label ectrodactyly. Show all posts
Showing posts with label ectrodactyly. Show all posts
Tuesday, April 13, 2010
Monday, January 11, 2010
Blinded me with Science
Today was difficult. The other girl at work who was pregnant while I was carrying you had her baby this morning. And since I was on the register, I was the one taking all the congratulations for her.
I had no idea how stressful that would be. I thought it would hurt--and it did--but mostly I felt like an overcoiled spring. I worked through it; no one noticed, and only one person thought to ask if I was okay. I told her that, as far as everyone knows, I'm fine. She understood.
I've been agitated and tense all afternoon. I wound up sort of tormenting myself by looking up pictures of people with ectrodactyly. I didn't see anyone affected exactly like you, but I saw several who were just as bad, and at least one that was worse. That was somewhat reassuring, but I'm not sure how to explain why. I guess because all of the doctors we've talked to so far have said that you were about as severely affected as you can be by this. And science makes me feel safer. It isn't like I can control this defect, but at least I can understand it.
And, for the first time, I'm starting to see how it has affected me. And when I look at the pieces, it seems obvious that I have the gene. The only thing we know for sure is that the bottoms of my tibia and fibula aren't perfectly formed. I found this out when I was about sixteen and went in for an X-ray of my ankle. No one ever really said anything about it. When I was young, I used to walk on the outsides of my feet, and to this day I'm a little pigeon-toed if I'm not paying attention. But my feet don't just point in, they roll under slightly when I relax. Sometimes I almost fall because my foot starts to roll under me mid-step. I always chalked it up to bad ankles. I guess that's true, but this isn't at all what I meant. My fingernails are brittle and peely no matter what I do to them.
Such inconsequential things, but when put together, it's so clearly the same defect--just so incredibly mild compared to everyone else. But that makes it more concrete. And I can deal with concrete. It's the abstract that boggles me.
Looking at the pictures (and reading several different articles and abstracts) was also painful. It shows me how very many ways this could hurt your future brother or sister. Even the milder versions can be so awful. And even if your brother or sister is as mildly affected as I am, he or she will still have to worry about it hurting their child.
We haven't heard anything from the genetic counselor since October. Your daddy is pretty mad about this. I'm not too happy myself. Last time she called, she said that they were not able to find whatever part of the chromosome they were looking for, so they won't be able to test the next baby. So we'll be back to watching the ultrasounds. Because I'm not phobic of ultrasounds at this point. Ho no, not me. At least this time we'll be going to specialists. And looking early.
I still cannot fucking believe that neither the doctor nor the ultrasound tech noticed that you were missing both arms and your leg was so deformed. Looking back at the ultrasound, it's not actually unclear. And when we saw the one at the hospital--that worst one--it was clear and easy to see--and you hadn't moved at all. And you weren't that much bigger--granted, there's a big difference in what can be seen between 19 weeks and 24 weeks, but it doesn't make much difference in the bones that we are looking at.
I guess I'm angry. It sort of surprises me; I haven't really felt all that much anger. But I'm angry now. Angry at the defect, angry at the doctors who told me I couldn't possibly have it when I did, angry at the counselor both for being the bearer of bad news and for the extended silence, angry at the doctors who didn't spot this.
I'm angry they didn't spot it at 19 weeks, but I'm glad they missed it. Because we had that much more time with you. Time when your Daddy got to feel you kick. Time that we got that special fourth of July. But that it was ultimately a good thing doesn't change the fact that they missed something pretty fucking glaring--and all the while, we were specifically asking them to look. We told them we want to count the fingers and the toes. All she was really interested in was getting a better view of your gender.
I left a message for the G.C. today, and I'm going to call again tomorrow...and the next day. I want an appointment; I want things explained to us. We've already gone through an entire miscarriage and haven't heard a peep. We're actively trying to concieve, and nothing. And I told her we were trying when I talked to her last. You know, that last time, when she said she'd call me within the week?
Anne of Green Gables was right; a few italics really can relieve one's feelings.
I had no idea how stressful that would be. I thought it would hurt--and it did--but mostly I felt like an overcoiled spring. I worked through it; no one noticed, and only one person thought to ask if I was okay. I told her that, as far as everyone knows, I'm fine. She understood.
I've been agitated and tense all afternoon. I wound up sort of tormenting myself by looking up pictures of people with ectrodactyly. I didn't see anyone affected exactly like you, but I saw several who were just as bad, and at least one that was worse. That was somewhat reassuring, but I'm not sure how to explain why. I guess because all of the doctors we've talked to so far have said that you were about as severely affected as you can be by this. And science makes me feel safer. It isn't like I can control this defect, but at least I can understand it.
And, for the first time, I'm starting to see how it has affected me. And when I look at the pieces, it seems obvious that I have the gene. The only thing we know for sure is that the bottoms of my tibia and fibula aren't perfectly formed. I found this out when I was about sixteen and went in for an X-ray of my ankle. No one ever really said anything about it. When I was young, I used to walk on the outsides of my feet, and to this day I'm a little pigeon-toed if I'm not paying attention. But my feet don't just point in, they roll under slightly when I relax. Sometimes I almost fall because my foot starts to roll under me mid-step. I always chalked it up to bad ankles. I guess that's true, but this isn't at all what I meant. My fingernails are brittle and peely no matter what I do to them.
Such inconsequential things, but when put together, it's so clearly the same defect--just so incredibly mild compared to everyone else. But that makes it more concrete. And I can deal with concrete. It's the abstract that boggles me.
Looking at the pictures (and reading several different articles and abstracts) was also painful. It shows me how very many ways this could hurt your future brother or sister. Even the milder versions can be so awful. And even if your brother or sister is as mildly affected as I am, he or she will still have to worry about it hurting their child.
We haven't heard anything from the genetic counselor since October. Your daddy is pretty mad about this. I'm not too happy myself. Last time she called, she said that they were not able to find whatever part of the chromosome they were looking for, so they won't be able to test the next baby. So we'll be back to watching the ultrasounds. Because I'm not phobic of ultrasounds at this point. Ho no, not me. At least this time we'll be going to specialists. And looking early.
I still cannot fucking believe that neither the doctor nor the ultrasound tech noticed that you were missing both arms and your leg was so deformed. Looking back at the ultrasound, it's not actually unclear. And when we saw the one at the hospital--that worst one--it was clear and easy to see--and you hadn't moved at all. And you weren't that much bigger--granted, there's a big difference in what can be seen between 19 weeks and 24 weeks, but it doesn't make much difference in the bones that we are looking at.
I guess I'm angry. It sort of surprises me; I haven't really felt all that much anger. But I'm angry now. Angry at the defect, angry at the doctors who told me I couldn't possibly have it when I did, angry at the counselor both for being the bearer of bad news and for the extended silence, angry at the doctors who didn't spot this.
I'm angry they didn't spot it at 19 weeks, but I'm glad they missed it. Because we had that much more time with you. Time when your Daddy got to feel you kick. Time that we got that special fourth of July. But that it was ultimately a good thing doesn't change the fact that they missed something pretty fucking glaring--and all the while, we were specifically asking them to look. We told them we want to count the fingers and the toes. All she was really interested in was getting a better view of your gender.
I left a message for the G.C. today, and I'm going to call again tomorrow...and the next day. I want an appointment; I want things explained to us. We've already gone through an entire miscarriage and haven't heard a peep. We're actively trying to concieve, and nothing. And I told her we were trying when I talked to her last. You know, that last time, when she said she'd call me within the week?
Anne of Green Gables was right; a few italics really can relieve one's feelings.
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