Siblings with disabilities and considering kids of my own, revisited

Note from Elysia: I haven’t posted a lot here recently because I’ve been going through a lot of emotional and intellectual upheaval. What I’ve written (and not posted) has been pretty raw and personal, and I’ve been hesitant to share. But this is exactly the kind of headspace I want to communicate – the part of having a SWD that’s messy, and the part I really desperately want to hear from other sibs about. (How do you cope? What have you learned? Can this help anyone else?) That’s worth risking sharing some of my internal chaos, I think. So here goes…

I’ve written here before about some of the thoughts that I’ve had about having a sister with disabilities and the desire to have kids of my own.

Turns out that internal conversation gets a bit trickier when you’re in a new relationship; I suspect it’s going to develop into something way, way bigger when I do eventually get to the point of discussing with a partner our readiness for children. (Yeah, not looking forward to that. I suspect I’m going to need to have a really awesome psychologist around.) I mean, hell, my current therapist recently suggested something I kind of have been aware of for awhile but don’t much like thinking or talking about: my fear of the unknowns in getting pregnant are so strong that it results in abstinence as my primary birth control method. (Which is only true insofar that fear has stopped me from pursuing sex when in relationships while not on hormonal birth control; I was on it for awhile for other reasons and stopped due to insurance/doctor logistics, but wasn’t involved with anyone at the time, so never found out if I was completely uninhibited/less inhibited regarding sex while on the pill. Life: it is complex.)

Let me tell you, all of this makes life a lot weirder for me. I really don’t want my sister to be central to my relationship with my boyfriend. I deeply resent that I ended up this way, so afraid of giving birth to a child as medically complicated as my sister that it actually makes me unwilling/unable to have sex. It’s beyond frustrating to see that in myself, and to have nobody to blame. Like every other damned thing that’s hard about my sister’s disabilities, undiagnosed and congenital, this is nobody’s fault. Nobody asked for this. We (Mom, Dad, me) didn’t choose it, except that we chose not to give up on her. Lily certainly didn’t choose this. And now: this guy I’m dating, he didn’t choose this…even if he has, thus far, to some degree, chosen me.

I’m hyper-aware right now that this is a new relationship where infatuation still holds sway, rather than (much slower to mature) love, and I find myself in a position where I feel compelled to have these big, serious discussions with the guy that feel like they belong in a later phase of the coupling process. I feel this way because I fear that if I don’t, we can’t have as much fun with the physical part of infatuation, because my inhibitions kick in and I find any sort of intimate touch anywhere from anxiety-inducing to physically painful. (Not just fear; this is starting to happen.) If I want to enjoy sex, I have to talk about my desire for children and my fear of what might happen to them, even if I do everything perfectly to ensure a healthy pregnancy. I have to talk about how I probably developed too much of a sense of protecting my bodily integrity because I hated being in the waiting rooms or struggling to find a place to sit in a doctor’s office (they never have enough chairs for Mom, sister, doctor, and patient) and I hated seeing what they did to Lily that made her uncomfortable or unhappy. That I feel like my own body can and probably will betray me at any time, because I’ve watched my sister’s body do that to her, and now my mom’s, too. (MS being a different kind of scary than epilepsy, for sure, but they’ve both crossed my mind when trying to figure out where this comes from.)

That pressure has been overwhelming. I mean, this man, he’s awesome, and he’s been patient and has wanted to hear what’s on my mind and has been open to having tough and/or intense conversations; I’ve been able to talk to him about some of this stuff. It’s very clear that I’m putting pressure on myself; now that I’ve found someone worth the effort, and now that I’ve started taking some of the necessary steps to disentangle my life from my family, I just want to get past all of the mess – as quickly as possible – and move on to what I envision as a (more-)normal life.

One that I’ve long hoped would involve (hopefully healthy) kids of my own. Eventually.

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