My sibling is disabled – should I have my own children?

I had a really good first date this weekend. We didn’t discuss Lily, other than her existence as my sister and her real name, because we were discussing names and languages and our common cultural history. We sort of skirted around the topic of whether either or both of us wanted kids during that part of the conversation. But it brought the idea back to mind in a big way for me. (You may have ready my earlier post^ on sexuality and siblinghood.) I am 30 years old. If I want to have my own children, I should do so within the next few years to minimize the risks of certain disabilities known to correlate with maternal age. I’ve almost always known that I wanted to have my own children; at some point I decided that it was a biological imperative (yup, I’m a biologist, through-and-through), but I also come from a family where family is important, if that makes sense. I have long dreamed of having a son or daughter (or multiple children) with whom I could share the joys of life, to whom I could teach things I find important, to watch and encourage to change the world in ways my parents did for me. I have struggled, like so many others, with the thought of bringing a child into an imperfect world, and decided that their joys could outweigh their sadness.

That said, like many older siblings of children with disabilities (or older sibs of very much younger sibs), I have informal parenting/mothering experience, and I know that parenting is hard. (Yes, worth it, but undeniably a lot of effort and sometimes sacrifice.) I’ve cleaned up after Lily, and cleaned her, and fed her. I’ve comforted her when she was sick or scared, even driven her home from school. I’ve picked out her outfits and given her presents. I’ve administered her eyedrops and her anticonvulsants, when my parents left me to babysit or were ill. Like I said, being a parent is hard; caring for a child with special needs even more so.

I don’t know if I can handle it.

My sister’s disabilities have no known cause(s). Thus, I can’t know whether my children are at risk for any or all of her medical problems. I’ve thought repeatedly in the past that my ovaries may harbor ticking time bombs, or that having kids would be like playing Russian roulette – aside from the exercise in probability/chance that having kids already is. Please understand, I am not saying here that I think my sister’s life is not worth living, or that she doesn’t have a good, happy life, or that the life of someone with a disability is lesser than that of a more typical person. What I am saying is that I want to spare any potential child of mine as much pain or trauma as is possible, and to shield him/her/them from an all-too-unkind society. Having biological children means running those risks. (And for simplicity, I will note that the abortion discussion is something too fraught to more than mention as an aside. This is about active decision to try to have kids, and whether to begin that process.)

I am also saying that, selfishly, I know that Lily’s care will fall to me, and that I since I already am her sister, I sometimes want to be there for her as best I can and not give any more of myself to care for more people if I don’t have to. Will I be able to handle caring for my own children and my sister? What if my mom’s MS^ gets worse and I need to help care for her, too? Can I do that and still be a brilliant scientist? A professor who actually cares about her students? (Let’s gloss over the problem of being both a brilliant scientist and a devoted mother in the first place.) I am already invested in Lily. Why invest in a new life, if I am already charging myself with caring for many lives that have already invested in me?

And yet I do dream about having biological children. I imagine how I can introduce Lily to them, the caution because they will be so small and because Lily’s reliance on babies = crying sounds or babies = diaper sounds will be…um, interesting, to say the least. Will Lily understand that my kids are my kids, if I become a mother? Will she know that she is their aunt? Will she be jealous? How will I explain to them about her – what makes her atypical, and what makes her so damnably special in the best possible use of that word? I can’t begin to fathom how I would go about this with a partner, either. How can I convince him that kids are the right choice? What if he convinces me that they’re not? What if I decide that they’re not and he thinks they are? Which, of course, is way too messy for any single woman to be contemplating. So I normally don’t.

Lily’s birthday is rapidly approaching. I can’t imagine life without her. I can’t imagine how my parents must have felt when she was born. It hurts us all deeply to see her hurting, to have lost her vision and to deal with the randomness of epilepsy. But when she laughs, we all laugh, because she’s just one of those people – a born actress and entertainer, a creative and daring personality. (Seriously, her impression of my grandmother is uncanny.)

…how could I not want children of my own?

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One Comment on “My sibling is disabled – should I have my own children?”

  1. I would like to say that the questions you are currently pondering about having children are hard to answer, and as a complete stranger I would not pretend to know how best you can answer them for yourself. However, I will say as someone who delayed having my own children (even though I was married to a man I loved and felt able to become a good parent) because of pursing advanced degrees (I have an MFA in English, an MA in American Studies and was heading towards a Phd and being a professor before burning out on the academic life) that you make the best choice you can at the time. I am currently 41, and was finally ready to try to have kids two and half years ago when I went to have routine health screening that turned up Graves syndrome. Since then I’ve dealt with the hyperthyroidism, and am now ready to try and get pregnant. I am by all medical standards risking a greater chance of a biological child with birth defects or Down syndrome. I may not ever concieve since there are some other issues that complicate my husband’s and I having frequent enough sex. For quite some time I was very anxious and sad that I didn’t have a child earlier on in my marriage or like my sister did when I was still in my thirties. I came to realize that if you really want children to raise as your own, when the time is right you can find a way to be a parent. Since I realized this my husband and I made some decisions. 1. We are ready to be parents now. 2. We would like biological children and if I get pregnant great (though this may or may work out). 3. Being parents is more important than being bio parents, so we are preparing to become foster parents and hope to find a child to adopt via fostering. This is how we have figured out a way towards our dream of having a family because I see so much joy in having and raising kids I can’t not try and have this even with the hurdles we may have to deal with. I think that you too will figure out a way to deal with the hurdles. Good luck with this.


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