The business of being a sibling

My parents asked me the other night whether I could be a remote participant in a meeting. This meeting was being held to focus my sister’s team, to be sure that the services they provide are truly “client-centered.”

I’ll be honest – at first, I shied away from this. I’ve rarely been allowed (let alone invited!) to be a part of my sister’s formal care structures. It was a little bit of a shock, and I needed a couple of minutes to process what it could mean. I’m afraid I surprised my parents; the tone of the conversation shifted a bit after my initial hesitation, encouraging me to be part of this to-do. I also had the legitimate concern that the meeting was scheduled for mid-morning, when I’m in my lab, and I’ve been doing experiments that make it impossible for me to use the phone for intervals that I can’t always schedule in advance.

But the real thing that shook me was when Mom used the argument that I’m Lily’s future. I am, and we all know it, but it’s rarely something we talk about. Why would we want to? Why spend time thinking about the day when my parents are unable to care for her, when that shouldn’t be for awhile yet? Why, yes, I just had a birthday not long ago, and yes, I’m feeling it. Just a little. And I’m facing a major transition, professionally, so thinking about being an active participant in Lily’s care…yeah, it’s scary. (And too late to back out; her coaches have already used me as a phone contact to help calm Lily out of an outburst.)

Anyways, Mom and I agreed that she would only call me to chime in if it seemed like my voice presence would help. She said she’d consider the questions and make a decision. When I hadn’t heard from them by noon, I figured that I was off the hook.

This turned out to be sort of true and sort of not true…in that Mom felt it would have been hard for me to participate, since they were working on a physical worksheet, but I’m going to be sent that worksheet so that I can contribute to it. Apparently, the form focused on two lists: Lily’s likes, and her dislikes. Her current coaches (= assistants) did a great job, Mom said, and offered some really accurate points. Predictably, they arrived at noodles, Star Trek, and Dad among Lily’s likes (I told you we were nerds!), and being misunderstood among her dislikes.

I have to say that I was proud to contribute boredom as a dislike, and Lily’s old “I Like Book” as a like. The “I Like Book” was introduced by one of Lily’s first speech therapists, and included large text alongside photographs of…well, Lily’s likes. (It used to hang on a ring from her walker so that new people could have help deciphering her speech.) I suggested that we could use a new version of the book to help Lily use tactile information as a memory guide, as well as serving as the basis for a new conversation piece. Mom’s acceptance of my thoughts definitely made me happy, and made me feel like I could contribute…even if I’m far away and focused on other things now.

An incredibly poignant moment for me was hearing about Lily’s friend’s contributions. This other young woman also has severe disabilities, and had programmed her speech device to say nice things about my sister, like her being a good wheelchair racer (they just participated in an annual fundraiser together with their coaches), a good sister, and a good friend. I joked that she might say Lily also liked ice cream, as the two of them go out for ice cream together sometimes. Mom laughed and said I was correct. It was really touching to think about their friendship, born out of the friendship of their mothers (who met due to professional connections), and their progress in the same program. Kinda cool.

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