A blog I just started following: “Say Hello, Yellow”

I think a lot of us sibs grow up feeling like we have to do everything on our own, because of the lack of independence so many of our sibs have had, and how often we get drawn into parent-type roles. So I don’t always use SibNet, as I’ve said, although I’m trying to re-engage, and I haven’t historically followed a lot of sibling blogs.

Things can change!

I just wanted to share this entry from a blog I just started following, called Say Hello, Yellow. It’s written by both a sister and a mom. How I know these people are my kind of people? They cook together!

Check out this recipe for banana oat cookies.

I may have to send this recipe to Lily’s apartment. She loves cookies, and this is a “safe” recipe for those of us whose sisters like to eat the unbaked cookie dough. 😉

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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!


From the search terms

Somebody used this phrase in a search engine and found their way here:

i dont want to care for my disabled sister

…and I can’t let that one sit silently.

Anonymous person? I hear you, loud and clear. There’s a reason I live 3000 miles away from my sister right now. (Okay, a bunch of reasons, most of which have nothing to do with her – I have this amazing job that can’t exist anywhere else.) There’s a reason my mom told me to go to the college really far from home if I wanted to do that, and not feel like I had to attend the local college that was my second choice.

Of course, I ALSO do want to care for my sister. This stuff isn’t easy, and there are times when all I want to do is scream at the world that this sucks – just because I am feeling mixed up about my relationship with my sister, not because of her disabilities! It can be freaking HARD to love someone who has really dramatic needs, some days, and I think it’s maybe that much harder when that someone has been part of your life for almost all of your life. I absolutely sometimes feel resentful that I am “stuck” with Lily, just by accident of our birth as sisters. I do believe that just being genetically related isn’t enough of a reason to make one person responsible to another. (The continuing choice to be responsible to someone IS a reason to be responsible to someone, I think. And I happen to believe that we as a community are obligated to each other, but I think that’s only a little bit related here.) I know that despite my resentment and frustration etc., I myself have made the choice to be responsible to and for Lily.

So: many hugs, if you want them, Person Who Searched For That Phrase, and best of luck. If you’re reading this, you should also feel free to contact me about writing your own post(s) here, if you think that you’d like that. Same for anyone else reading.


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.


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.


Signal boost: announcing SibTeen!

I haven’t been good about keeping up with SibNet recently, but I noticed that there have been some discussions about creating new groups to specialize in support for different age groups, beyond the SibKid/(adult) SibNet options now. Looks like there’s a new group out there: SibTeen!

Here’s the news from Don Meyer, director of the Sibling Support Project:

For quite a while, I have wanted to create a place on the internet just for teens. I am happy to say that SibTeen is now available both as a Yahoogroup and a Facebook group! You can learn more about joining SibTeen by visiting http://www.siblingsupport.org/connect/sibteen-facebook-group-and-yahoogroup

Many thanks to Ariella Meltzer, Christiana Redman, Lisa Chow, Pat O’Connor and others who helped me with this!

Best, as always,

Don

I hope this becomes a valuable resource for those who need or want it!


Signal boost: Celiac disease awareness

Some of y’all will remember my relating how Lily and I are nerds (and I’m maybe a little bit of a Wil Wheaton fangirl). Well, it turns out…Wil also is a sib: his sister has Celiac disease, as does their mother. He just posted about this, and about the new website his mom started to help raise awareness for CD. (Check out the comments on Wil’s blog for some website recommendations from Celiac patients – recipes, support, etc.)

In addition to wanting to promote that, I also wanted to share one of those not-quite-perfect response moments I too often have:

It can be extremely frustrating to have a loved one following a specialized diet because their medical conditions demand it, when the rest of the country is seizing upon it as the newest and bestest weight loss plan. (We can talk at some other point about my feelings and my understanding of the science of fat and obesity, but remember: I guest posted at Shapely Prose.) I wouldn’t at all be surprised if a lot of people end up losing weight and/or feeling way better if they reduce gluten in their diets, given how poorly we seem to understand the diversity of human responses to gluten and the preponderance of gluten-filled foods in this country – it’s quite possible that this fad diet will help people learn to cope with milder problems processing gluten. (I think my mom’s been having this problem; I had wondered if it were possibly related to her MS, since autoimmune diseases are just fun like that, to my non-professional mind: if your body is attacking itself, who’s to say what the fallout will be?)

So this little petty voice inside of me insists on snarking: gluten-free is a fad diet, even if that’s not how it started or its most crucial role and people are going to blithely skip about, reveling in their weight loss miracles and totally ignoring the fact that they’re benefitting from a diet that is, literally, a matter of life and death for a lot of people. Kinda like the Atkins diet; total fad diet, and yet based on the ketogenic diet that is the last resort for a lot of people with otherwise intractable epilepsy. You know, the way my sister’s may be headed. It can be ridiculously irritating to observe, and I know I’ve gotten mad more than a couple of times because of the waves of popularity of the Atkins-related diets and the lack of awareness accompanying that about the people who need such diets for therapeutic reasons.

Maybe someday I’ll post about food in more detail here. I mean, Lily’s diet has to be fairly carefully externally regulated, given that her anticonvulsants affect her appetite, and my parents are being super careful with her in the wake of her nearly-fatal Salmonella infection. Both of my parents have had their gallbladders removed, Mom’s got MS, and Dad’s got diabetes. The requirements and preferences of any of us are likely to run afoul of someone else’s requirements and preferences, which is not such a delicious development. (Hey, I just realized why I am so insistent on eating what I like when I want these days: I’m fighting what feels like the inevitable lack of food freedom. Sigh.)

/end snark and fussiness

I know people with Celiac and have known people with gluten and related sensitivities and allergies for years, but clearly not enough people are in the know. So congrats and thanks, Mrs. Wheaton, for the new website, and thanks to Wil for sharing!