A little moment of sisterhood

Recently I had the great delight to see Sarah McLachlan in concert for the first time.

To give you a sense of what this means to me: the album Surfacing was the first brand-new CD I bought for myself, as a senior in high school. This was the age of Lilith Fair, which I didn’t get to, but my parents bought a concert DVD for us. The next year I started college and found that Sarah was only one of the voices who spoke to my young self about life, love, feminism, and belonging. We call them by their first names, mostly: Sarah, Ani (DiFranco), Tori (Amos), Dar (Williams). The Indigo Girls, as a duo, got their full name. I gravitated towards singer/songwriters: Lucy Kaplanksy, Tracy Chapman, Mary Chapin Carpenter. I’ve now seen Lucy Kaplansky, and saw a set by Dar Williams at a festival – but I’d never seen performances by most of these artists who are iconic to my feminist subculture.

Those artists, and my love of them, made an impression on Lily. To this day, many of her favorite songs are those I loved during my late high school years. She has some favorites from Surfacing.

Forgive me for that amount of detail; it makes the rest of this that much better. 🙂

So: I got home from the concert, high on feeling the sisterhood and warmed by the resonance of my progressing life with Sarah’s new songs. During one of my phone calls home, I was telling Lily about the fact that I got to “see Sarah McLachlan.” I asked her if she remembered what songs Sarah McLachlan had sung that she liked (musicians almost always get full names in our conversations), and could tell that Lily was…not really connected to the conversation. Trying again, I named “Building a mystery” as a song she had performed, and then, putting extra excitement in my voice, I said that she also sang “Ice Cream.” That’s a song I’d put onto a mix CD for my sister, because she’d picked up on it when I had the album on.

To my great surprise, my *mom* started singing it, trying to engage Lily. I take for granted that we all have memorized more of Lily’s favorites than we like to admit (she repeats them so often), but that really caught me off guard. Mom paused, and I figured Lily had just not felt like being part of the conversation.

…so of course, Lily just started BELTING OUT “Ice Cream.”

And now I feel like I’ve done an okay job being her big sister.


The “books for my sister” project

I mentioned not long ago that I’d made a “conversation” book for my sister. It’s a small photo book, which could fit in many purses and definitely in many small bags and backpacks, and it’s meant as something Lily can share with people she meets.

I added a second book: a book about my perspective, as a sibling, about my sister.

Things I included:
– where I live and why, how I keep in touch, etc.
– a guide to Lily’s alter egos
– a description of some family and friends
– suggested activities
– “creative” stuff (art, play jewelry making)
– “normal grown up” stuff (cooking, cleaning, exercising, doing volunteer work)
– fun stuff (hanging out with friends, going out, making phone calls)

And oh, the pictures! Pictures of Lily cooking. Pictures of her action figures, her leg braces, her favorite movies. Pictures of her in her wheelchair, going for a walk with my mom (I took that picture over Thanksgiving) and bowling with her friends and participating in family get-togethers. Pictures of the two of us together, as youngsters and as adults.

So far, I’ve gotten positive feedback from my parents, since I had the book delivered to them (and a duplicate, in case of damage to the first). I hope to hear soon whether the staff find it helpful. I mean, the entire goal of the project is to have a little bit of input into Lily’s life, but one that preserves my non-parental relationship with her and doesn’t require me to find a ton of time for her while I am finally getting settled in at my new job. I feel like I’ve seen a LOT of posts on SibNet about people who are their siblings’ custodians or guardians or otherwise legally responsible for their sibs, or who are basically excluded from caretaking, but not quite as many that are about the way I am with Lily. We are close and I want to be part of her life, but she has our parents there to make sure she’s okay on a daily basis.

I’ll let you know how it goes!

Signal boost/reminder: shop and support the Sibling Support Network!

Since the day after Thanksgiving is the “official” day people here in the US open their holiday shopping season – mostly those who celebrate Christmas – I want to remind you that there’s a way to help the Sibling Support Network earn some money: shop in their Amazon store.

Here’s the info from the director of the network, Don Meyer:

Dear friend of Sibshops and the Sibling Support Project,

If you’re like me, you will start thinking about gifts for loved ones in the next few days. And, like me, you may prefer shopping online instead of heading to the mall.

If you are one of the millions who shop at Amazon, I have a favor to ask: Will you support the work of the Sibling Support Project by beginning your shopping by “entering” Amazon through the Sibling Support Project’s “Astore”?

You will get the same great deals you always get at Amazon, and Amazon will donate up to 6.5% of the purchase price to the Sibling Support Project!

Here’s the website for our Amazon Astore [Note from Elysia: link opens in a new window!]. Please add it to your favorites or bookmarks.

Once you add something to your shopping cart and proceed to checkout, you can then wander anywhere on Amazon. (And, if needed, you can yank any item out of your shopping cart prior to purchase.) Any eventual purchase made within 24 hours of entering the Astore will benefit the Sibling Support Project. 

Thank you for your support! Here’s the link again.

One last thing! If you’d like to celebrate the holidays with a direct gift to the Sibling Support Project please click here. Those who give at the $100+ level get a free copy of our newest book, Thicker than Water: Essays by adult siblings of people with disabilities!

Wishing you all the best,

Don Meyer

Director, Sibling Support Project

PS—In case you were wondering, we never know who buys what on our Amazon Astore, so we’ll never know you bought grandpa a subscription to Playboy.

PSS—If you think this is a cool way to do good while doing the inevitable holiday shopping, will you please share this email with others?

Echoing Don’s request, if you know people who like to shop using Amazon, please let them know about this link! SibNet, SibKids, the new SibTeen, the workshops, the books – these are all resources that have helped so many of us siblings, directly and indirectly. It pleases me to be able to help share a way to support a great organization…and in these uncertain economic times, to do it in a way that doesn’t place a huge financial burden on people who want to help.

A small triumph! (update on the insurance/hospital fiasco)

My mother says that she got notification from the insurance company – they’re going to cover Lily’s last hospitalization, after all! Sounds like the copay will be reasonable, too, which is a huge relief.

I’m still feeling pretty irked that my mom had to challenge the decision in the first place, and I’m fully willing to admit that my response is more emotional than logical. Which is okay by me – this is my sister’s life and health, and my family’s finances and ability to care for my sister. It’s stuff to which a transient emotional response is reasonable.

The question of life expectancy

This month, Lily turns 27. I’m not sure why it’s hitting me so hard this year that she’s growing up, aside from the fact that her being 27 means I’ll be 30 this month, but this year I really am struck by how old we both are getting.

I’ve been asked in the past by friends how long Lily was expected to live. I don’t know the answer, and damned if I’m going to ask my parents. That said, it’s clear that Lily has outlived the pessimistic estimates of various doctors. Her glaucoma pressure was managed (until her retinal detachment, when it ceased to be an issue). Her hydrocephalus was managed. Her epilepsy is, well, mostly controlled. She’s been amazingly resilient to infections (I’m the one who gets sick). Hell, Lily survived an incredibly awful, terrifying fight with Salmonella that had her in the ICU for a bit over a week.

Not only has Lily survived to this point, but she’s managed to thrive, too. She’s in her own apartment, has a busy social calendar, goes out into the community. Her vocabulary continues to increase, her comedic timing is improving, and she’s simply still continuing to grow and develop.

So I don’t dwell on the question of whether this is all something of a miracle. I know that she’s already outlived a lot of early estimates, from the days when she still needed surgeries to add, subtract, or relocate. Strangely, despite my normal pessimism, I never assume that she will not outlive my parents, that we will both do that, the way that typical siblings might do. Lily is tough – she’s got my mom’s persistence and my dad’s stubbornness. While I do rather want her to stop with the screaming-for-manipulation, I look forward to many years of watching her take on the world.

Happy first year of independence, Lily!

A year ago today, Lily became the official occupant of an apartment unit. She started out with short visits there, while furniture and staffing were finalized, and now spends almost all of her time there and very few overnights with my parents.

It’s incredible, really. Six months before she got the apartment, Lily was sedated in a ICU bed, fighting to recover from an extremely bad infection of Salmonella. (That story will be the subject of another post.) Now, she’s much more independent than I think I had ever dared to hope she might be.

When Lily lost her vision, she used to sit in the middle of a room and not move. She had a hard time with learning how to navigate without sight – she even gave up, in some ways, helping us to help her do things like get to the bathroom. My family moved to a new house while I was away at college, and Lily never quite seemed to learn her way around the place, depending on us to help her. Mom said that the first time Lily was in her new apartment, she actually crawled all over the place, exploring. More recently, Mom accompanied Lily and one of her assistants to the apartment from home after a shared meal, and Lily, immediately after being helped out of her wheelchair, bade farewell to her, saying she was tired, and headed off to her room…alone. It may seem like a small thing that she knows how to move around a relatively small space, but it means so much more than that.

I am deeply grateful to the three women who are her companions. I know that it’s a job, and they get paid for being there, and that they were carefully chosen as people who could be friends. But Lily is a rambunctious handful at best, and it takes a lot of talent and investment to be around her around the clock for people who haven’t known her all of her life.

Here’s to a first year of success for Lily! May there be many more to come!

Quick note: old habits die hard

I call home a lot to check on everyone, and to let them know that I’m still alive and healthy. (Or sick and in need of care packages!) Ever since high school, though, when I called home to ask for rides home after the math tutoring sessions I attended and sometimes got no answer because Lily was having a seizure, I get worried when nobody picks up the phone.

That happened last night.

Of course, by this point in time, we all have cell phones, and I know that my parents sometimes actually go out and do stuff, now that Lily’s not home all the time. Thus, I called one of the other phones a little while later. Definitely not an emergency. Turns out my folks were invited to dinner…at Lily’s apartment! Which makes me happy. Mom didn’t have to cook dinner, Lily got to have company – and there was sparkling apple cider to drink, so it must have been quite festive. 🙂 I know that it will be hard for me to stop worrying whenever the phone doesn’t get answered, but it’s reassuring to think that now I can replace some of those thoughts with positive ones.