Saturday, November 5, 2011

SNSS: Sunshine

I found today's SNSS guest, Jim W, when he was guesting over at another blog, Yeah. Good Times. by Jillsmo who herself was an early SNSS contributor with a lovely post about her sons. 

I liked his voice. I wondered, "More kids? SNSS potential?" and followed him home to his blog, Just a Lil' Blog where I found out that, yes, Lily has an older sister. Yay!

In fact, the blog's tag line? Explains it all: "The true life adventures of a little girl with autism, and her struggles raising her two parents with only a big sister to help her."

Jim is smart and funny and wonderful to read. I am so glad he is now on my radar.

And now? This beautiful tale of sisterly love -- and be sure to watch the short video at the end!


Sunshine - by Jim W

“What do you miss most about your sister, Emma?” I asked her while we drove to Wisconsin.

“Making her laugh, and when she smiles,” she replied sadly.

“What do you miss least?” I wasn’t sure I wanted to ask that question, it felt like a weird sort of betrayal, but I wondered what she’d say and she didn’t miss a beat.

“Getting spit on.”

When Lily was born, in a concerted effort to short-circuit any perceived monopoly on attention that she might be hijacking from her hitherto only-child sister, we bought a fluffy white teddy bear and gave it to Emma from Lily.

We said, “This is from Lily” and we read the card aloud, “Thanks for being a great big sister to me, Love Lily.”  Emma at three didn’t question Lily’s precognition of her future bigsistermanship. 

We’re blessed in many ways with the kids’ relationship. Lily, though not particularly affectionate in general, genuinely cares for and about her big sister, asking for her when she’s not around and hovering over her clumsily, touching her face or asking for “skishes” - what Lily calls it when Emma lays down on top of her and says “I’m going to squish you!” and Lily giggles and says “I want more skish!"  And Emma has been the best big sister we could possibly have hoped for; patient, understanding, loving, and playful.

We had decided to attend the wedding of my wife’s sister in Wisconsin without Lily.  Our reasons, filtered through guilty consciences ring hollowly even now in hindsight, but they were valid then, and the details that unfolded over the course of the trip only served to confirm them:  Long trip confined to the car, cold weather in an unheated church, loud music and crowded dance floor at the reception, upstairs bedroom, gas fireplace, then a long drive home. Throughout the event we had several “ah hah!” moments where we looked at each other and communed wordless agreement, “she could not have handled this.”

It was the first time we’d really separated the two kids for any significant length of time.  There’s always the tool of divide-and-conquer that married parents of two busy kids are forced to utilize at some point, so my autistic five year old daughter, Lily, and her neurotypical nine year old big sister, Emma, are away from each other often, but in the same ways that any siblings born three years apart are; for brief stretches of therapy, or dance practice, or softball games, always back together again just in time for bed.

My parents took care of Lily while we were away.  She loves them and always has fun playing with them, and that was our primary argument to Emma whenever she would get sad about the upcoming separation, “But you know Lily is going to have so much fun with Gramma and Papa!”

“Yeah, I know.  I just don’t want to be away from Lily.”

In the days before we left I had tried to record a video of Lily saying “I love you, Emma!”  I figured if it was happy enough, it’d bring a little joy to a big sister who I knew was going to miss her little sister.  I pushed “record” and asked Lily to repeat the phrase.  Sometimes that goes like this:

“Say, ‘I love you, Emma!’” I’d say.

“Say I wuv you Emma”, she’d reply, echoing the request.

As I pressed “record” this time and asked her to tell her sister she loved her, she just kept repeating, “Where is Emma?  I want Emma.” And no amount of prompting could convince her to go “off message.” 

I imagined myself playing this video for Emma while we were on vacation, with Emma asking for her sister, and me trying to reassure her that Lily was fine using a video of Lily repeating over and over “Where are you Emma??  I want Emma!”  It didn’t seem like a great idea.  I scrapped that project and instead tried to get her to sing “You Are My Sunshine” with what I hoped would be a “congratulations” to the happy couple as the grand finale with mixed success.

As we dropped Lily off for school the day of our departure none of us handled it well, but Emma had the hardest time.  Occasionally over the course of the days leading up to our trip there had been tears, and this day was no exception.  We walked away from the school, leaving Lily crying with her school aide, and I picked Emma up, hugged her tightly as she sobbed softly against me, and tried to stay composed.

“I miss Lily,” she said, her words muffled by my shoulder, and we hadn’t yet even gotten in the car to drive away from the school.

“I miss her too, baby.”

Let me return to the subject of Sibling Saturday with a rewrite of the trite but true, “If you’ve met one child with autism, you’ve met one child with autism:  “If you’ve met one set of siblings affected by autism, you’ve met one set of siblings affected by autism”.  Not as catchy, to be sure, but just as true.

My daughters love each other and are good with each other in ways both unique to Lily’s autism, but also the same as any other loving neurotypical sisterhood.  They irritate each other and get in each other’s way, they fight for TV time, but at the end of the day they miss each other and want each other around all the time.

I know from reading other accounts of siblings’ relationships with each other that I can’t extrapolate any generalized wisdom regarding typical sisters and their autistic siblings, anymore than typical siblings relationships can be generalized to rules of thumb for other typical siblings.

Five years later the teddy bear that Lily gave Emma on the day she was born was with her throughout our wedding trip.  She left it briefly in her grandparents’ room one evening, and cried when she couldn’t get it back, saying, “It’s the only thing I have from Lily!” until we called and left messages for her grandparents pleading with them to call us and we’d pick up the bear.

They did, and we did, mollifying Emma.  She had a favor from Lily, almost like the knights of old, carrying something to remember her loved one by, tilting not against her fellow knights, but her own loneliness. 

And that made her the smart one.  I could have used a favor too.

In a way I found I had one. We all did. The resultant video of Lily singing “You Are My Sunshine” was something my daughter (and my wife and I) watched over and over and over during the trip as the bustle of the pre/post wedding details would lapse into brief leisure and our brains and hearts returned again to the missing member of our family.

Lily was asleep when we finally arrived home at the end of the trip.  My parents put her to bed at our house that night and waited for us. After they left, we all went upstairs to Lily’s room, creeping into it and standing over her happily.

Emma kissed her finger tips and intoned “I love you Lily” quietly over them, like an incantation, smoothing her fingers through Lily’s hair as she slept undisturbed.

It’s good to be together again.

"You Are My Sunshine"


I really don't know what I can possibly say to cap this beautiful, beautiful post about a pair of loving sisters, about this lovely loving family.  Anyone who knows the contentious nature of my sons' relationship will know how moved by and deeply envious I am of the depth of these sisters love and care for each other. 

This line really kills me: "I just don’t want to be away from Lily." because Ethan begs daily to have Jacob sent away. Sigh. 

And now that you've gotten to know these girls a little bit here, please follow Jim back home to Just a Lil' Blog to read more. Even though Jim's only been blogging for a short while, there are many gems there.

Try starting here, with this post about the girls' relationship, or this one, about appreciating the small moments.  Try this one: Wedding Trip Decisions going into more detail about the thought process behind this trip.

Finally, do not miss this thoughtful post about things that have inspired Jim to become a more involved parent and to write about parenting autism.

You're also going to want to follow Jim on Twitter, where he is known as @blogginglily and where his current avatar is the wonderfully vikinged up:
Jim W
I'm sure he's going to change this soon, and thought you should see it!
Thank you so much Jim for sharing your beautiful family with us here today.

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