04 December 2012

My sister was so happy to have me home for the Thanksgiving holiday that when I first announced myself to her, she grabbed on to me and had a hard time letting go. I can’t blame her, really – wouldn’t you physically keep hold of someone you wanted to spend time with if you couldn’t see?

It was great to see her. We’ve had enough space recently that we really missed each other. It’s so much fun to be with someone who gets you and cares about you but also is willing to give you a bad time, without malice and just because.

It was also painful, of course. Lily was so happy about celebrating Thanksgiving, and about having me there, that she wanted to share it…and said that she wanted to call Grandma. I quietly told her that I knew, and let the subject drop. I assume Lily interpreted this as, “Well, you’re asking for stuff again and we have our reasons for not giving it to you, so we’re going to talk about something else now.” That Grandma died is something I’m still not sure she has been told, and I am sure she doesn’t understand.

Lily’s also transitioning staff still/again. I keep wanting to sit down to talk about what other people prejudge her to be, partly because of this constant exposure to new people…and honestly, it makes me hesitate, because it’s also so painful to see her struggle to process all of these new people.

But! Let me tell you the cool thing I did that’s working: I made my sister a conversation book.

Most of you probably know that there are a bunch of websites out there that sell products that incorporate photographs. Well, I went to one of those sites and built a photo book. Each page has one or two pictures of stuff that Lily has in her life: her Star Trek action figures, her Medic-Alert necklace, her rocking chair. I captioned each page (or picture) with a phrase that I imagined Lily might say, were she to tell someone new about whatever was in that picture. (Um, using correct grammar. Mostly. :-))

Apparently her staff LOVED it. It’s simple and not super long, has some of the most frequent people and things she talks about, and matches pictures to words.

Bonus: I can order more. (I just got the one because I wanted to see how it would work.) Then if someone loses it or damages it, the information isn’t gone. I’m working on a similar book that has “our stories” in it, which is specifically from my point of view, because I’m not there every day. In the draft text, I list Lily’s various alter-ego voices and their origins. I describe the family and friends she talks about most. I tell them what Lily’s favorite conversational set pieces are: the correct responses to the questions she is likely to ask dozens of times per week or month.

This may not work for everyone, but maybe it will work for some sibs. (Or other loved ones!) It seems to be working for us, to bring my permanent relationship with my sister back into the focus of people who live close enough to spend time with her every day.

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2 Comments on “04 December 2012”

  1. Hello! Do you use Twitter? I’d like to follow you if that would be ok. I’m definitely enjoying your blog and
    look forward to new updates.


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