It Hurts Me Too

When things go wrong,
go wrong with you
it hurts me too.
-- Tampa Red, and many other blues artists since

For many years, Joy's been slow to show us if she's feeling pain. I wrote about it at the end of 2008 in terms of high pain-tolerance. She used to pick up a whole handful of splinters without batting an eye, and back in '08 would let me dig them back out with minimal reaction. (By the time of the "handful of splinters" post in 2010, she was starting to object to such operations somewhat, though still not reacting obviously when the splinters went in.)

Things are changing on the pain-reactions front, though. Now when Joy gets a splinter, she grabs for me to show me right away. She cries more readily at pain, does a much better job of indicating where the "owie" is, and wants an adult to rub it / kiss it / make it better.

There's been a change in how Joy reacts to Rose's pain, as well.

Time was, Rose would burst out into tears, and Joy would have "inappropriate" reactions that would be difficult to process with everyone involved. Joy might try to swat Rose, or burst out laughing, neither of which were reactions that felt particularly supportive to her sister!

But earlier this week, we had three occasions in short succession on which Rose began to weep, and Joy responded by crying real tears as well.

Rachel Cohen-Rottenburg has been doing some wonderful work about empathy, founding the site Autism and Empathy and fighting the good fight against those who maintain that a lack of empathy is inherently a part of autism. I haven't been able to give the site the attention it deserves, nor the level of thoughtful comment, but I've been following along as I can. And I had to think of Rachel's work in context of what I'm seeing in these interactions between Rose and Joy.

"It hurts me too."

The sad occasion this week which caused Rose to weep so frequently was the passing of our bunny Ellie. Ellie has been our final remaining house-bunny since the death of her partner Phoebert a year ago January. Ellie was only a year or two younger than Phoebert, definitely an elderly bunny, and we had decided against getting her a new companion because we were ready to try a pet-free home. (Claiming back the space, the time spent on weekly box-and-enclosure cleaning, the food-and-litter expenses, etc.)

We actually thought we were going to lose Ellie 6 weeks ago, when she stopped eating her bunny-chow... but she was still willing to eat greens, and so we went with a hospice-style approach where we gave her all the greens she liked as long as it made her happy in her final days... and she perked back up! But she was definitely in decline, and things went so fast this past Sunday it became clear that this was really it. So Ellie and I made one final trip to the vet on Monday.

Rose & Joy both got to pet Ellie's remains. We had a burial in the back yard.

I'm less worried this time around about what Joy does or doesn't understand. She probably "gets" quite a lot more than we're tempted to think she does. I've been more concerned about Rose, who has been reading The Giver by Lois Lowry in school -- it's a dystopian novel about a would-be perfect society, in which one of the mechanisms for keeping things perfect is "releasing" imperfect infants and the infirm elderly by means of lethal injection. I was steeling myself for the conversation that connected Ellie's final injection to The Giver, and maybe even to Joy?! But I don't think the connection was made... which is something of a relief. Rose is growing up fast, but maybe it doesn't need to be that fast.

JoyDad and I have had rabbits in our home since 1994. Ellie's departure is the end of an era.

Good-bye, Ellie-bun. We miss you.

Ellie
2000(?)-2011

In Memory of Grandma Judy

"GrammaJ" left this world for the next on Monday afternoon, February 28.

We will miss her so very much.

Grandma Judy
1941-2011

Farewell Gifts

Joy's GoTalk communication device had a once-in-a-lifetime message on it for sharing time with her kindergarten class a week ago Thursday.

I said goodbye to my (GrammaJ) last night. We laughed together.

GrammaJ has survived so very much. She lost half a lung to lung cancer years ago, I think it was before Joy was even born. She battled back from a temporarily paralyzing stroke and walked again. She triumphed in a round with breast cancer. She adapted her lifestyle to diabetes and shed a lot of pesky pounds, learned to speak in a whisper after her vocal cords were damaged in surgery, slowed her pace to accommodate heart issues.

But this time is different. GrammaJ is in a hospice facility, and her remaining time with us is likely very short now. It happened suddenly. On January 2, she and GrampaK hosted the family at their home for our fourth Christmas of the season. A week later, she went into the hospital for some tests. A week and a half after that, she was on her way to hospice, with the news that the lung cancer had roared back overwhelmingly, untreatably.

GrammaJ is GrampaK's second wife, with the longer of the two marriages: they just celebrated their 20th anniversary this past year. They married just a couple of years before JoyDad and I started dating. They were in Wisconsin, we weren't -- so I didn't get to know either of them very well until we too moved to Wisconsin in 1998. Then we discovered her warm hospitality and sweet personality and fun-and-feisty sense of humor, and we grew to appreciate how well she and GrampaK were matched!

When we had kids, there was no question that she would be "Grandma" -- not step-grandma or some other nickname, but really-truly grandma. JoyDad's mother passed away before the girls came along; Joy had just turned one when we had to say goodbye to my mother. The girls' step-grandmas ARE their grandmas.

GrammaJ has been so flexible and loving with Joy's needs. She carefully Joy-proofed their home when we'd visit (an extensive task due to many knick-knacks and collectibles!), made sure to serve food the girls would eat, and brought the most delicious cakes for their birthdays. In fact, Rose had me make lemon cake for her birthday party this weekend, with GrammaJ's special super-lemony recipe.

GrammaJ's Elvis Collectibles

The chance to say a final goodbye is a difficult gift. Rose remembers the goodbye trip to Kansas when my mother was in her final hospice-weeks, so for her there's a familiarity to this. She has been processing this farewell quietly and somberly so far.

With Joy, I've had bouts of angst in the past about not being able to properly explain deep and momentous things, from the death of our bunny Phoebert to the birth of the Christ child. Somehow in this farewell, I'm not feeling that way. Not that I have a much better sense of what she does and doesn't understand. I don't. But somehow a few simple, straightforward sentences are enough this time. Maybe, put together with whatever she heard when her classmate's father died of cancer last fall, she is processing this on some deep level. Or maybe not, and these connections will come together another time. Either way, she is who she is, and it's going to be OK.

It was very important that our whole family get to be in on the visit to GrammaJ. We went mid-week, heading out directly after school. Rose had drawn a picture for GrammaJ, an early Valentine to hang on her wall. Joy had brought -- herself. And her giggles! GrammaJ was sitting up in bed, awake and happy to talk with us and exchange hugs. Joy entertained GrammaJ with a giggly sneezing-game, where Joy & partner exchange utterances of "ah... ahhh... ahhhh..." and then comes a joyful "CHOOOO!" GrammaJ shared her apple juice from dinner; we weren't sure what Joy would do, since she's been refusing apple & most other juices since last April. But Joy accepted the gift of apple juice with a smile, and drank almost the whole thing.

I so appreciated the chance to see GrammaJ, and give her a hug, and tell her what a magnificent grandma she is. And that I love her, and to share the message that I first told Rose during our last visit to my mother -- that a loving God is taking care of all of us, and will still be taking care of grandma, even when she's not with us any more.

We love you, GrammaJ.


Elvis - Can't Help Falling in Love

But Wait, There's More...

More emergings, that is.

Joy has become much more attuned to greetings and goodbyes. The high-five came about in the fall, I believe, and has been a lovely hook upon which to hang interaction at Sunday school and kindergarten practice. What's new, though, is a level of engagement and interaction, plus new signals. Joy has re-learned the bye-bye wave! And she also does a fun new greeting, where she gives a huge grin and stretches out a pointer finger. Sort of like in the movie E.T., if I'm not dating myself too badly here!

Another re-emergence is the "Clap, clap, uh-oh!" game. I don't remember when we first invented this -- I think it was a couple of years ago. It's a two-person game, facing each other, Person 1 is set to clap their hands and Person 2's hands are on the outside. Person 2 "makes" Person 1 clap hands, several times in a row. The soundtrack is "Clap... clap... clap..." and then Person 2 makes Person 1's hands miss and cross instead of clapping, and the vocalization is a big giggly "UH-OH!" Joy is not only willing to play the game again, she can be either Person 1 or 2. And she is willing to supply the "uh-oh" herself more often than not. AND, on Sunday when I was on nursery duty at church with her, I caught her in a quiet moment playing the game with herself. And she did the motions and said "cah, cah, uh-oh!" All on her own.

She's getting good at opening the car door from the outside and getting all the way in, with our Honda Fit at least.

She's mastering the "flip trick" for putting on her coat.

This morning she was playing in the kiddie area at the carshop while we were getting an oil change, and her shoe came off. This is a girl who, when her boot pulls off in the snow, can walk for several steps before anyone notices that the boot has gone... she not only noticed the shoe right away, but picked it up, then on voice-prompt brought it over to me. And as we were putting in on, she said "ahhhhn" (a nasal-sounding, French-like pronunciation that had an implied "n" rather than an American "n" but still!)

And just so as not to ignore Miss Rose, who is doing some pretty amazing things herself: she drew a picture last October for a contest at Ask magazine, where they were supposed to submit ideas to scare monsters away. Her submission was selected and published in the March issue!

Her caption: "This monster has electric snakes coming out of his head. He will scare ghouls out of their pants!"

Boo!