A confluence of events = poor Lily

I’ve explained recently how weird it is for me to be on the sidelines of LIly’s growing communications problems. I say growing because, as I didn’t explain, her experiences and worldview are growing nicely, and she’s in ever-increasing need of vocabulary and conceptual frameworks to order and relate these experiences. I’ve also mentioned how her seizure behavior is on an uptick, and may or may not have mentioned that one of her prescriptions is being adjusted by her neurologist. You’ve read about my feelings of jealousy that Lily gets my parents’ attention for medical necessities when I just want some attention, and how she and I seem to experience a lot of physical discomfort at the same time as each other, hundreds to thousands of miles apart.

Today, the confluence of those factors resulted in a fabulous, typical but not really situation. My cell phone ran out of power while I was talking with my parents, getting ready to show them via webcam a new piece of furniture I got recently. I attempted to call them back to see if they were ready for this, and got a busy signal, which I assumed (correctly) meant that Lily had called. Eventually, they came back, and we got the webcam thing straightened out. After other conversations and admiration of the new furniture, my mom and I ended up talking about Lily’s phone call. Turns out that she had a headache, and her assistant wanted to know what the preferred course of action might be. Mom’s opinion is that Lily might be having a migraine, as she indicated that her eye hurt. I concurred, for reasons you’ll learn in the next paragraph, and suggested giving her a Coke and Excedrin (a combination that works remarkably well for my own migraines). Oh, did I mention that my mother has long suffered premenstrual migraines? And that I just started my period, and Lily and I still seem to have parallel discomforts with hormonal cycling? Yeah, it’s a fun family.

So, I feel bad for the kid. In pain, without the words to articulate what hurts and how. In a family where even without her additional issues she might have had discomforts aplenty. In competition with her sister for parental phone time. *sigh* Let’s hope her week gets better from here.

Siblings with disabilities…and puberty

I’ve had an awful lot of conversations with people over the years about various aspects of life with Lily and my concerns for her continued health and well-being. I think I’ve discussed the effects of puberty on her life fewer than five times, and most of those were quick mentions. It’s a topic that has reappeared suddenly in our lives, and so I think it’s worth revisiting here today.

I think it was an aide in one of my sister’s classrooms who first provided a possible reason for the resurgence of Lily’s seizures at age 13: puberty. The theory goes that women metabolize faster during their menstrual periods – their bodies just process food, drugs, waste, etc. more rapidly than during the rest of their menstrual cycle. In young women who take drugs to control neurological disorders, like Lily’s anti-convulsants, this means that the carefully developed plan for administering medication…breaks down. The plan (as I’ve gathered; I’m not in on the neurologist visits at this point) is generally to keep the level of the drug constant in the body. Doses are given on a regular timeline, such that the new dose quickly picks up where the last one fades out. (Many of us use analgesics this way – ibuprofen every four to six hours, for instance.) Well, assuming this “faster menstrual metabolism” idea is correct, the schedule breakdown translates to drug levels being too low before the next dose can be given. For Lily, this means seizures.

Lily’s neurologist didn’t really think highly of this notion. I found a news piece supporting it in The New York Times, in one of their science pages, years after the conversation. Either way, around the time she was 13 and I was 16, Lily entered puberty. Higher seizure activity in general occurred during the next few years, some of which appeared to be related to actual menstruation. (Thankfully, this was rare, and seems to have stopped. I say thankful because Lily has a fascination with the feel and sound of crinkled plastic, and with diapers. She went through a phase of insisting that her baby doll wear diapers, which she utterly destroyed while handling. Anyways, she couldn’t really tolerate feminine hygiene pads without thinking of diapers and thus playing with them. I can’t tell you whether I’m glad she has periods or not, or unpack the complications of what that means about Lily as a person with desires, needs, and ideas of her own; I’m just glad we all are spared the strangeness of keeping her clean and healthy.)

Flash forward to right now. I’ve been asking my parents whether they track Lily’s seizures, and I guess they’ve tried it but nothing much has come of that effort. This past Friday night, I called home to see how everyone was doing, and was told that Lily was sleeping in the wake of a pretty big seizure. I was preoccupied with my own emotional discomforts, and the prospect of a weekend snowstorm that derailed my plans to visit a friend, and didn’t think too much of it. Until the next day, when I realized that I was in the throes of PMS (hence the preoccupation with needing to see people I like – especially when we had plans involving chocolate!), with the acne and wild emotions that that entails for me. A couple of days ago, talking to my mom about something, I asked if Lily had acne that day. My hunch proved accurate – Lily had bad acne, and it was disrupting her life. (She gets very inflamed pimples that she sort of paws at, since she doesn’t understand what’s going on, can’t see what’s going on, and is experiencing discomfort.) I pointed out that my period had been early during the time that I was home with her, and observed that the two of us might be on a similar hormonal schedule. (This is very amusing, as we tend to get sick at the same time, even living thousands of miles apart. And call home at the same time. And then some.)

I (lightheartedly) recommended that my parents and Lily’s assistants feed her chocolate-covered peanut butter pretzels, a particular favorite of mine when I’m craving salt and sugar simultaneously. Lily loves peanut butter pretzels. (Yay sisterly advocacy!) But it’s really a serious issue, and I feel like I’m not sure what to say, other than to remind my parents of the way that I am, in hopes that Lily and I are similar enough that what comforts me could comfort her. It’s beyond irritating that we have no ready solution for the fact that her anti-convulsant dosages break down, and that the neurologist has been more dismissive of the idea than supportive. It’s heartbreaking to me to think of Lily experiencing a grand mal seizure, or a few, roughly every month…in addition to the absence seizures and assorted other relatively small seizures she already experiences every single day. I know we all have learned to process them, in our own ways, over the years, but that doesn’t mean it’s easy. It’s that much more frustrating to realize that the small comforts that I can grant myself are hard to grant to her, since she may not have the language to describe pain, discomfort, or confusion.

And that’s just one aspect of puberty! Convincing Lily to wear bras was a huge battle for my mom. We’re not sure if she has any real sexual drive, but if she does, what does that mean? We’ve all noticed that Lily likes to talk to men – like the time my mom told me she was “flirting” with the ambulance attendants on her way from one hospital to another – but we’re not sure what that means. (Lily is incredibly social anyways.) Sometimes Lily tells me about her friend, a young man who is and has been in some of the same programs as Lily. She tells me that he loves her. Does she know what that means? I know she associates the word love with us, her family, and some of the people that she enjoys being around, but does she have a concept of romantic love?

Can my parents, Lily’s team, and I actually be supportive of Lily’s adult desires? Will we even recognize them? Will she?