As I get older and yet don't age much, people have gotten more insistent about how I just must have kids. No, I really mustn't. If I do decide to raise kids, I will foster. I will be the sort of foster parent who teaches the youth in my care life skills like budgeting and how to fill out a job application and an apartment application and assembling cheap furniture. But I have exactly no desire (in fact, the opposite of desire) to have biological kids.
"But it's different when they're your own!" people shout at me. No, it isn't, because my issue isn't with kids in general. I like kids. I choose to work with children and youth. I mentor & I teach a scary sport. And if I do foster? Those kids are mine. Well, they're their own first & foremost, but a child I find through the system (which I know has a lot of problems. I know. Unethical and leaving kids out to dry when they're 18 & lots of yuck. That isn't where I intended to go with this)--that child would be every bit as much my baby as one I actually incubated. Given that I really can't do the whole pregnancy thing, more, because I wouldn't completely wreck my body in a completely predictable way. I get all protective and full of wonder with my athletes, & I see them like 10 hours a week. I am completely capable of developing the suite of feelings and attachment to a kid I didn't birth, if that is the road I choose to take. Really I am.
But right now it isn't.
"So you like kids! You've considered the steps to take to have a family via an alternate means! So you should have your own!." Woah woah woah hold the phone why are you so obsessed what I do with my uterus? Focus on your own damn uterus. I like kids. And I already have a family, they're called chosen family. Raising mini-mes is not necessary to have a family. And, since you asked, I really shouldn't have babies so it's a damn good thing I don't want to.
Oh you want to argue with me about how I could have a miracle? Nope. Time for some genetics: I have Classical Type Ehlers-Danlos Syndrome. It is a heritable connective tissue disorder, basically my collagen doesn't so much hold things in place as generally suggest they hang out in this general region. Currently I am doing extremely well for someone with classical EDS: I have minor pain, I do have recurrent subluxations but I can reduce every one by myself. The only eye problem I have is I'm moderately nearsighted, though my sclera are blue, but that's mostly just cool. I have a mild Chiari malformation where currently all the troublesome symptoms are treated without taking some bone off the back of my head. I have other cooties too but this is the one that's most immediate in the pregnancy you're so convinced I need to be fulfilled.
FOLLOWING PARAGRAPH GETS REALLY GROSS WITH THINGS THAT HAPPEN WITH RUBBER BODIES. BE WARNED. IT'S REALLY ICK ICK ICK
EDS is autosomal dominant. That means there is a 50% chance that the fetus would inherit the gene from me. Pregnancy in an EDS uterus haver is extremely risky, lots of chance of miscarriage, loads of worsening the laxity (because relaxin, the hormone that lets the everything open up, doesn't take a break just because the uterus haver is already made of rubber. It means new & exciting dislocations). An EDS haver with an EDS fetus? It's even worse. The placenta coming off early, lots of interesting prolapsing. Like, theoretically, every organ in the godsdamn pelvic cavity can prolapse all the way into & through the vagina. Isn't that just pleasant? "Sorry, we're going to whisk your extremely early baby off to NICU and try to put its shoulders and hips back in place...annnnd currently your uterus is on the outside with a large part of your intestines along for the ride. Major surgery. Now."
END TRULY DISGUSTING
And I haven't been able to even find much on what happens when 2 people with autosomal dominant connective tissue disorders have kids (because I do my research, because shooting people down is just easier than "I don't want kids I just don't I appreciate yours but I do not want my own" and resorting to "wow you want me to die in this revolting way" is actually the easier way to get them to back off). But my guess is that it's like the disgusting paragraph except more gross. I don't want that for me & I don't want that for any kid if it is foreseeable.
"You don't want your kid to have your thing. OMG closet ableist". Um. Hold the phone again and also this fruit basket. I do not want to have kids at all, I have a connective tissue disease that makes it really dangerous (even more so than adrenal insufficiency and epilepsy, which also do not stack well with pregnancy), and do not want kids because I don't want kids, is not the same as "I do not want a kid like me bc disability". If someone came to my door with an autistic epileptic kid and the income to support them, okay. I could do that. It isn't a disability thing, it's an assured mutual destruction thing. And a "no really I do not want to go through all that" thing. I have no issue with more kids with my disabilities existing. I have a problem with me making them.
Sorry to shit on your superior "childless uterus havers are bitter and evil and hate kids" bubble. I like kids. I do not want them. And before you get too high on that horse, remember that I'm not rare. There are lots of people who don't want kids but don't mind yours (until you get all sanctimommy. Sanctimommies who think that women without children are evil make their kids a lot harder to tolerate because it also requires tolerating their parents.) A lot of people can't have kids for medical reasons, or for financial reasons, or for undiscovered reasons, but the prying of folks who think everyone needs babies is painful. You're hurting them more than you're hurting me, because I just tell you about that gross paragraph, or tell you that you're harming your child's ability to relationship with a big swath of adults. But it doesn't cut me to the bone like it does someone with fertility difficulties.
I still don't want kids. Nothing you say can make me want kids. I like other people's kids. Yes, it's different when they're my own because either I was matched via an agency or they did terribly life altering things to my body that are not really on my list because they can be fatal. That isn't a good kind of different.
I'm 32 godsdamned years old & you can stop trying to change my mind at any time now, really.
I got told by a doctor that I should want kids because so many other people came into her office wishing they could have kids of their own, and I was seeking a procedure that would make that (thankfully) an impossibility. I was there to get treatment for a condition that had put me in the critical care unit of a hospital once, and the alternative would've been repeated surgeries -- which, given my history... no. This was one of the instances where being incredibly stubborn served me well, but still, spending a couple hours trying to convince someone that my life and health were more important than my fertility was not the funnest experience I've ever had.
ReplyDelete"I got told by a doctor that I should want kids because so many other people came into her office wishing they could have kids of their own..."
ReplyDeleteIsn't the inability to grasp "But I am not the same person as those people" fascinating?
All of that, but I don't understand why "because I don't want children. I already said that." (or "I don't want my own biological children. I already said that.") would not be sufficient.
ReplyDelete"And I haven't been able to even find much on what happens when 2 people with autosomal dominant connective tissue disorders have kids (because I do my research, because shooting people down is just easier than "I don't want kids I just don't I appreciate yours but I do not want my own" and resorting to "wow you want me to die in this revolting way" is actually the easier way to get them to back off). But my guess is that it's like the disgusting paragraph except more gross. I don't want that for me & I don't want that for any kid if it is foreseeable."
ReplyDeleteIf they have the same condition, then you have a 25% chance of a normal kid, a 50% chance of a typical form of the condition, and a 25% chance of being homozygous for the condition (what that means varies by condition, but usually it means a more severe variant).
If they have different conditions, you have a 25% chance of a normal kid, a 25% chance of a kid with condition A, a 25% chance of a kid with condition B, and a 25% chance of a kid with both conditions.
Most of the cases of 'two parents both with same or similar dominant genetic condition' that I know of are people with short stature, by the way. Achondroplasia, the most common short stature condition, is generally lethal if homozygous, so two achondroplasics having a child have a 25% chance of a child with severe deformities who dies soon after birth. Pseudoachondroplasia is another dominant short stature condition, and I have no idea what the homozygous form is like. However, I did see a case study of a child with both achondroplasia and pseudoachondroplasia, and she was alive and reasonably healthy but had clinical features of both of those conditions put together. I remember a picture of her beside a picture of her achondroplasic sister at the same age, showing how she was shorter than expected just for achondroplasia.
I know how to run the Punnet square (I just A'd in a 300 level genetics class).
ReplyDeleteI don't know the practical implications of a kid being homozygous dominant for classical EDS, or for classical EDS + hyper mobile EDS, or for classical EDS + Marfan, etc (or for a kid with a different connective tissue disorder falling out of a classical EDS uterus haver). And that's things that would be important for me to know.
Also do not want biokids. Health Reason: Moderately severe asthmatic, have a 1/3 chance of asthma worsening during pregnancy (only two types of asthmatics worse than me, in descriptive terms: there's "On everything and the kitchen sink and still not controlled so feeling horrible all the time" bad and then there's "as before, except so bad that it's dangerous without being on high dose oral steroids all the time" bad. I'm "on everything and the kitchen sink to attain good control" bad). If asthma worsens, it often doesn't get better. From what I've heard from my doc, it's like 50/50 as to whether it's permanent for an asthmatic woman who has worsening of asthma in pregnancy. Also all the family history risk factors for high-risk pregnancies and pregnancy bad things like gestational diabetes or pre-eclampsia or placenta previa or etc.
ReplyDelete... Anyway, that's like a 1 in 6 odds of fucking over my lungs even worse than they already are.
Not even considering risk of death due to severe asthma attack goes up in pregnancy (in part because benevolent sexism of the "but think of the BABY" variety where women get under-treated and in part because imagine that it's hard to struggle to breathe when there's something big compressing your lungs). I'd rather not die.
Non health reason: I have no interest in experiencing pregnancy. None. Zero.
I'd be glad to become a dad. It's just that I'm really burned out with women (they just don't trust guys anymore). There are many risks I have given thought to about fatherhood: Divorce, Custody fights, Child Protective Services crap, Common Core in school, pedophiles, and even gangs. No matter what, if I am blessed with a son, I will do whatever it takes to transform a young boy into a MAN! I'll be as firm with my son as my dad was with me; I don't intend to shock him, I want to simply show him real life.
ReplyDelete"Whatever tomorrow brings, I'll be there...
With open arms, and open eyes..."
I couldn't agree more, and pretty much for the reasons you stated — even the reasons you mentioned in the comments: my EDS and asthma, as well as EDS-related dysautonomia, not to mention the bleeding disorder I have from Hermansky-Pudlak syndrome. And I've never had any interest in being preggers, let alone giving birth. It's one of those “interesting life experiences” like bungee jumping, driving a race car, or going to business school that holds little-to-no interest for me. Thankfully, my parents never got on my case about it, and most other people left me alone about it on the grounds that “Blind people can't rase children”, which is bullshit of course, but it had the nice silver lining to being legally blind: a “get out of having to justify not having kids”-free card.
ReplyDeleteIn my opinion the pestering about whether/when do you want to have kids, doesn't have much to do with your conditions, but more to do with your current age...
ReplyDeleteIt's one of those small-talk-thingy... everyone has to suffer through it...
You have a lot of variations on that small talk-that-is-actually-a-way-too-noisy-question-which-doesn't-concern-anyone
When you reach the "average" child bearing age, when your circle of friends and family at large is in that period, everyone is in your face about it.
First they pester you on whether you want kids
If you have a child they pester you as to when you are going to have the second one
If you have a second child, they pester you on whether you might be tempted to have a third one, especially if both kids are the same sex...
If you get a third child suddenly you are either a religious nut, an idiot who couldn't manage its contraception, or a plain lunatic... let's not even talk of the case where you actually have MORE than 3 children... depending where you live, you start facing even administrative nightmare because even tax return sheets don't have room for more than 3 children for deduction lol
From 3 children on, they pester you on whether you finally did that vasectomy because that had to be an accident, right?
In some ways, I'm wondering if it's not a reaction to the fact that for the last few decades WE as individuals have explicit power ( well we fool ourselves into believing it at least) on conception.
Children are something you are supposed to plan, and not something that you deal with once it happened ( I mean in my family in the older generations, at least 2 kids were born less than 9 months after wedding date... those couples got married because of a night of fooling out... )
Good luck to handle it... after a decade or so of pestering it finally stops... :-)
(checks calendar) - OK, it's still 2015 CE. So, I'm trying to understand people who still think that the decision to have biological kids belongs to anyone but the uterus havers (though I think consultation with partners is also important and useful). It's not like we have a shortage of people on this planet...
ReplyDeleteAs for ischemgeek's comment, this provides an example of why I am in favour of a person's absolute right to terminate their pregnancy at any time. I don't want the courts or the doctors or anyone other than the pregnant person to have the power to decide whether the pregnancy is more important than the life/health of the person whose body is hosting the pregnancy.
(checks calendar) - OK, it's still 2015 CE. So, I'm trying to understand people who still think that the decision to have biological kids belongs to anyone but the uterus havers (though I think consultation with partners is also important and useful). It's not like we have a shortage of people on this planet...
ReplyDeleteAs for ischemgeek's comment, this provides an example of why I am in favour of a person's absolute right to terminate their pregnancy at any time. I don't want the courts or the doctors or anyone other than the pregnant person to have the power to decide whether the pregnancy is more important than the life/health of the person whose body is hosting the pregnancy.
Ironically, if you had a bio kid and passed your disability on to them, then people would be telling you that you should never have had kids knowing you have a genetic disorder.
ReplyDelete