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

Elvis Has Left the Campfire

When last I wrote, the Joy-family was off to a weekend's worth of activities, to include a camping adventure with our congregation at a nearby state park. Last year we had a fine success with this annual tent-camping event, Joy's first overnight campout beyond our yard. We did another successful backyard campout on Labor Day weekend, but ended up deciding not to take the tent out this Saturday. JoyDad was feeling under the weather, and for a while I thought I might be taking the girls for the evening on my own.

Fortunately, though, he perked up enough to make the trek to the campground after Joy's afternoon therapy, so the whole family could take part in picnic potluck and campfire conviviality.

Joy sat well at the unfamiliar picnic table and ate, per usual, a wider variety of goodies than her sister did. For entertainment afterward, she found a plastic band from a firewood bundle that she held onto almost all evening, a fine distraction from the fall leaves on the ground that might otherwise have consumed her attention (and that she might have attempted to consume herself in greater numbers than she did!) I spent a nice chunk of time blowing bubbles for her as the dusk was falling, and then when it got too dark to see bubbles, we moved over to the campfire.

Our congregation is big on singing, with four-part a cappella hymns a regular feature of our worship. This translates to lots of lovely harmony on the folksongs around the campfire as well. JoyDad always brings along his guitar to these events; sometimes one or two other people will bring guitars as well, but this year there were three other guitars, two banjos, a ukelele, and a bunch of copies of the folk-song compilation Rise Up Singing.

So at one point between songs, JoyDad inserts a query as to whether there's anything by Elvis in that thar songbook. And our local Elvis impersonator (what, doesn't every congregation have a local Elvis impersonator?) asks JoyDad does he know the opening lick to "Suspicious Minds." And JoyDad, who knows that song forward & backward, swings into the opening bars without a pause. Someone shines a flashlight-spot on our Elvis dude, and we get the entire song, all the moves and facial expressions and rich Elvis voice -- the whole deal. Yours truly, with Joy on my lap, was able to chime in with some of the other gals on the back-up vocals... it was quite the highlight of the evening. Elvis sighting at the campfire, who knew?!



Thank-you. Thank-you-very-much.

n of 1, and the Myth of Fingerprints

Two apparently contradictory concepts floating in my mind this morning with regard to Joy.

First is how incredibly unique this little kiddo is.

In a discussion with one of her therapists earlier this month, we ended up describing her as "n of 1". How can you apply other people's research studies to this particular individual, really? How can you generalize anything about her to anyone else? She keeps busting our expectations right and left.

It makes me think of fingerprints. And snowflakes. Not gonna find any two the same, though I understand that with snowflakes at least, it's technically possible.

And yet, when we look outside our window, we see a blanket of white, and the individual snowflakes all blend together into a lovely sparkly layer (a much thinner layer than it was earlier this week, thanks to a wild spate of warm temps and rain!)

And then I think of a line from a Paul Simon song from his Graceland album:

He said, "There's no doubt about it,
It was the myth of fingerprints --
I've seen them all, and man, they're all the same."

All human, we are.

All children of God.

All us neurodiverse, amazing people.

And now, we can't have a reference to Graceland without making the Elvis connection... there's another line in that song that sounds for all the world like he's singing:

Elvis is the watermelon.

I'm serious! Give it a listen. I defy you to hear it any other way...

Of Zerbitz and Apple Pie

The weather wasn't promising! Heavy fog, considerable rain, tornado watches on the other side of the state line, flash flood watches on our side of the state line, and us with over an hour's drive over the river and through the woods to grandmother's house...

I'm happy to say that almost all the JoyDad relatives made it who planned to be there, though we sure missed AuntieLO who was stuck home with a bad cold. One cousin is celebrating Hannukah in Israel this year (where it's a little-bitty holiday since it doesn't have to compete with Christmas over there), and Auntie Meerkat had to work at the zoo so she and ARatM are arriving for a New Year's visit. Otherwise, though, we had a clean sweep!

Did I ever tell you that GrammaJ has something akin to an Elvis shrine at Christmastime? Rose is developing the appropriate Elvis appreciation -- each knick-knack comes with a little push-button Elvis soundtrack, so she got to hear some of the classics!


Joy had a fine visit, considerably more laid-back than others in recent memory. GrammaJ and GrampaK didn't have to Joy-proof nearly as much. Past Christmases involved lots of running up and down the back hall, where all doors had to be closed at all times to prevent unauthorized excursions. This year? Almost no hall-running, and no dashes through open doors. Joy was mostly content to range around the living room, hanging out on couches and flirting with various relatives.

Joy spent the most flirty-time this year with Auntie Save-the-Tatas (there's been a lot of breast-cancer surviving going on in JoyDad's extended family lately). Auntie Save-the-Tatas entertained Joy with "zerbitz," an entertainment whereby auntie makes a funny raspberry-noise on Joy's tender little bare feeties. Joy loved it. We got the huge Joy giggle-and-grin, accompanied by extending her foot again and again for another round. "More zerbitz please!" said that little foot. "Do it again, do it again!"


For those who are following the JoyDad family tree here amidst the aliases, Auntie Save-the-Tatas is the wife of JoyDad's older brother, who appeared in the Santa 1963 photo. I hereby dub him Uncle Marathon, as he's planning to run another one in 2009. He is the original source of the running craze that has been gradually sweeping the entire family, from ARatM to UncleDO to JoyDad (temporarily sidelined these days) to myself. Thanks for the inspiration, Uncle Marathon! C'mon AuntieS/RatK, all the cool kids are doin' it...

As we experienced at GreatGrandma's for Thanksgiving, it's easy to let the Joy-guard down just a little too far. What would a holiday be without an incident, after all? This holiday's incident involved GrampaK and a delectable slice of apple pie, which he was enjoying as he sat on a living-room couch. Joy moves like lightning when she sees something she wants... and in this case, she wanted two big fists-full of GrampaK's pie! Well, at least it wasn't as dangerous a cleanup as the shards of glass at Great-Grandma's!

We came home with a trunk-load of presents and smiles on our faces, and the holiday isn't over yet. The grandparents on JoyMama's side will be arriving with the New Year.

Meanwhile, if I post twice more by Wednesday, I can do post #100 on New Year's Day...