You Can't Judge a Book By Its Cover

The unprepossessing back of a turtle escaping through a mud puddle

The spectacular undercarriage of that same turtle

Rose and I have read two excellent young-adult novels in recent weeks: Out of My Mind by Sharon Draper, and Wonder by R.J. Palacio.  (Some parts she read for herself, but mostly we did them as read-alouds). Both books feature 5th-grade student characters, a girl named Melody in Out of My Mind and a boy named Auggie in Wonder.  Rose will be a 5th-grader herself this fall!  Each 5th-grade protagonist has a strong family with two parents and a sister.  Each is intellectually ahead of the pack when it comes to their school peers.

And each has physical differences that shape how they interact with the world, and how the world reacts to them.

Out of My Mind was recommended to me via Partners in Policymaking.  Melody, who narrates in first person throughout the novel, has cerebral palsy.  She has a photographic memory, she's addicted to words, she can control an electric wheelchair, she can point and tap with her thumbs, but she can't walk or talk or feed herself -- so the world sees only the disability, and only Melody has access to the rich inner life of her own mind.  At least at first... When you put an electronic communication device at the disposal of a girl who knows how to read, you can expect that some amazing things will happen!

Melody's school experience, though, is just ugly.  She's been shunted off to a segregated "special-needs" room since she started school, and only in fifth grade is the school beginning to experiment with "inclusion" classes, where everyone (students and teachers both) completely underestimates Melody and her "special needs" classmates.

One aspect of Out of My Mind that hit me particularly hard was Melody as Cassandra-prophetess, when she sees something that's about to happen or in progress of happening that she needs to warn someone about -- and nobody can understand her or even get that they're supposed to be listening.

The story also brought back strong memories of my experiences on high-school quiz team.  (No further details about the novel forthcoming here; you'll have to read it to find out how this fits.)  My junior year, I was the only girl and the only junior on our high school's state championship Hi-Q team, a high-profile televised experience.  Our come-from-behind win in the last two minutes of the championship round was about the most exciting bit of my entire high school career.  It was fascinating to look back at my own experiences through the lens of Melody's adventures.

Rose was interested in Melody, and made a few tentative connections to Joy and her iPad.  But it was Auggie's story in Wonder that really grabbed her.  August Pullman gets to start prep school in grade 5 after a childhood of homeschooling through facial surgeries and medical fragility.  A stew of genetic irregularities has left him with a face to which people react with disgust and ridicule.  It makes for a challenging 5th grade year.  Fortunately Auggie, like Melody, is clever and has a strong sense of humor.

I think Rose was particularly captivated by Auggie's story for several reasons.  One, the author (a first-time novelist!) really captured the rhythm of middle-school dialog.  It sounded like people Rose knows.  She also appreciated the current pop-culture references (Diary of a Wimpy Kid!  Justin Bieber!)  She also liked that Wonder wasn't solely narrated by Auggie -- you also got to hear parts of the story told by other kids from Auggie's school, plus his big sister and a couple of her friends.  Oh yes, Auggie has a big sister!  So Rose got to hear big-sis Olivia describe the family as a solar-system where her brother is the sun and the rest of the family orbits him and his needs.  (To what extent is that us?)  She got to hear Olivia talk genetics and how she carries a gene for part of Auggie's condition that might affect her own child-bearing decisions... a new idea for Rose, and something we could assure her was not part of her situation.  But there were some genetic-science words introduced that have relevance to our story too, like "mosaicism."

I liked that neither story set up their 5th-grade protagonists as saints.  For the most part, they resisted the temptation to make everything too OK at the end.  And they both did a great job of weaving the end of the story with threads that had been introduced at the beginning.

I had to wonder, though -- I don't think that it's a coincidence that both characters were written to have above-average intelligence and were able to outshine their typical peers.  Melody could demonstrate (given the right technology) that she didn't belong in the "retard room" as her typically-developing classmates cruelly called it.  Auggie's academic performance could withstand the scrutiny of mean-spirited parents who didn't think a kid with a face like his could possibly be worthy of their precious (and deliberately non-inclusion) prep school.

Anyone got any good recommendations for novels with protagonists whose disabilities affect their intellect?

Meanwhile, on the drive home from the annual Memorial Day sojourn in the Upper Peninsula (whence cometh the turtle pics), Rose started to write a story based on herself and Joy, inspired by Wonder and Out of My Mind.  Maybe I'll be recommending her opus to you one of these days.

Not So Lucky As All That

Last November I wrote a post with the title Lucky, wherein Rose and I discussed how much things had changed from when I was in elementary school and kids with disabilities didn't get educated in the same schools as their typically-developing peers, if they got to go to school at all.

Her priceless summation of the situation:

It's so lucky for Joy's class that they get to know her and have her in school with them!

Those words are haunting me just now, as we're thinking ahead to next year with IEP-ing and with filling out questionnaires that will inform how next year's classes get assembled.

You see, although students with disabilities at Rose & Joy's elementary school are educated in classrooms with typically-developing classmates, it's not spread out evenly across the school. The school practices "clustering," whereby the kids with IEPs all get assigned into just one or two classrooms per grade, so that the special-ed staff can focus there and collaborate with just one or two regular-ed teachers. (A similar thing happens with students for whom English is a second language).

What ends up happening is that the ratio of disability to non-disability in the cluster-classes gets pretty far out of whack in comparison to the real world. Any behavior issues associated with the disabilites end up concentrated too -- and multiplying upon one another. And it can leave some folks thinking that students with and without disabilities really shouldn't mix, because look at all the problems that arise!!

It also means that Rose is not so lucky as all that.

Like her mother 40 years before... Rose has never been in a homeroom class with a student who has a significant developmental disability.

Just now, that feels incredibly unlucky to me.

She Has a Dream

I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.
--Dr. Martin Luther King, Jr.

In the middle of a conversation about school earlier this week, Rose told me about an activity that her class had done. In anticipation of the holiday in honor of Martin Luther King, Jr., they talked about King's famous "I Have a Dream" speech, and then they were assigned to come up with a dream of their own to share with the class.

Rose's dream was that her sister Joy would get a good education and go to
college.

It shouldn't take a prophetic voice to articulate what I grew up with as a basic expectation in my own family. But sometimes it does.

We've been cautious about educational expectations for Joy, as you may well have picked up if you read my reflections on the ABLE Act. It's hard to see college when your first-grader still doesn't meet most of the standard criteria on the kindergarten-readiness lists.

And yet, it's all too easy to fall into the "soft bigotry of low expectations." (That phrase has entered into the conversation so completely, I was surprised when I looked it up to see where it had come from. I see it as rather an ironic source to use on this day of all days, but there's an important truth carried in the words.)

Here's how Kathie Snow, who writes at DisabilityIsNatural.com, put it in her essay "The 'Right' to a Normal Life" (emphasis is mine):

Is a child with a disability given an allowance? Expected to help around the house? Taught how to use the phone? ... Is the child expected to participate in and experience the traditional, ordinary, typical activities of her brothers, sisters, and similarly-aged children? Is she expected to achieve an academic education which will enable her to attend college, vocational school, and/or be employed in a real job? Do we expect the child to leave home one day, live on her own, get married, and live a REAL LIFE as an adult? When we don't encourage and provide typical experiences (and have high expectations), we're robbing the child of the "right" -- the opportunity -- to lead a normal life.

I had just read Snow's piece as preparation for a program I'll be participating in over the next six months, Wisconsin's Partners in Policymaking, a training for self-advocates and family members who want to learn to influence public policy around issues of developmental disability. In fact, I'd read it the very morning of the day that Rose told me of the dream she'd shared.

No coincidences!

I know I'll be paying a lot more attention to our expectations for Joy in the coming months. In a couple of long-overdue baby steps, we've begun serving her meals on the same ceramic plates as the rest of the family, instead of the plastic pocket-plates she's used up to now, and transitioned her to Rose's beloved "Cooshie Booster" instead of the buckle-in booster that's been the default (she's way past big enough not to have to buckle in at mealtimes!)

There will be other changes too -- small steps can go big places.

If we're going to live in a nation where Joy will be judged, not on the elements of her disability, but as a capable human being who will spend her lifetime learning and growing and achieving, we need to lead with high expectations ourselves.

Songs of the Season, Part 2

JoyDad and I had a remarkable time at Monday's Solidarity Singalong! Hundreds of protesters filled the Capitol rotunda on the ground floor and balconies, singing recall-themed versions of Christmas tunes, in cheerful defiance of our governor's latest attempt to quash dissent. A resounding win for free-speech!

Photo credit madtowntj of Daily Kos

The re-purposed tunes of the Solidarity Singalong are at least somewhat analogous to a little ditty to the tune "The Farmer in the Dell" that we've
been experiencing a lot lately:

The A says "aaa", the A says "aaa"
Every letter makes a sound,
The A says "aaa!"

The song is from a series of products by a company called Leapfrog. (Link goes to a YouTube video -- I'd've embedded it, but it looks like they've disabled that option for this one.)

The "A says 'aaa'" phonics-washing of Joy began around the time of her birthday at the start of the summer, when she got a Leapfrog Fridge-Phonics toy from Auntie S as a present. The toy has a magnetic back, so you can stick it on the fridge -- or in our case, the fireplace.

You choose a letter to put in the slot, and then the toy sings the song for that letter. Or, push the little orange notes above the letter and it sings the familiar ABC song.

Some months after we got the toy, we discovered that the Leapfrog Talking Letter Factory DVD, which we'd gotten for Rose when she was just beginning her love affair with letters and words, had become acceptable to Joy as well. The cartoon story on the DVD involves a tour of a factory that makes letters, and sings through their "every letter makes a sound" songs one by one, with funny little additional mnemonics (for example, the E cups its hand to one ear and says "eh?" as if it couldn't hear you!) Joy particularly loves the opening menu-sequence, something she apparently shares with quite a few kids on the spectrum.

Then still more recently, just at Thanksgiving, we pulled out yet another saved Leapfrog artifact from Rose's toddlerhood -- her "My First LeapPad." Kids interact with this clever toy by touching a series of printed pictures with an attached electronic pen. You can buy a variety of spiral-bound books, each coming with its own game-cartridge. To tell the toy what page you're on in any given book, you have to touch the green "GO" circle on that page with the pen in order to get the correct noises that go with that page. It's definitely a couple of steps beyond the baby-toys that have been the staple of Joy's repertoire.

And guess what? We already had the "I Know My ABCs" book and cartridge, built around the "A says aaa!" song!

I was amazed how fast Joy figured out the sequence of turning on the toy, turning the pages of the book, and tapping the "GO" cicle. The latter is a particular accomplishment because the "GO" circle is at a different location on the perimeter of each page, in order for the toy to differentiate which page's fun to serve up. I love to watch Joy scan all the way around the edge to find the "GO"!

After all this musical phonics-washing, Joy now can fill in the blanks when we sing her a letter:

JoyMama: "The B says..."
Joy: "buh!"

And look what else she's been doing lately, another Rose hand-me-down:

One more Songs of the Season post yet to come... stay tuned!

Recall Walker!

You won't hear about it in the national news, because they didn't care to cover it. Not a single national news truck was there; the only national news figure was Ed Schultz, and he was there to march with the firefighters (though I'm sure he'll report on it in his Monday show.)

Besides, there was no riot. In fact, there wasn't a single arrest.

Somewhere between 25,000 and 40,000 protesters converged on downtown Madison Saturday to fill the Capitol Square -- and the Capitol Building -- with a determined reprise of our gatherings this past February.

The occasion was this week's launch of the signature-gathering drive to recall Governor Scott Walker, who bulldozed into office this past January with a secret agenda, heavily-funded by ultra-wealthy out-of-state corporate string-pullers.

That secret agenda has since marched forward in lock step with the American Legislative Exchange Council (ALEC), that secretive organization where corporate representatives and Republican state legislators get together to write legislation to the benefit of the corporations. Then the legislators take the agreed-upon texts back to their states and we get waves of cookie-cutter efforts at:

• privatization of activities funded by tax dollars, such as education and health care -- corporate profiteers want those lovely other-people's-tax-dollars to redound to their own benefit, while paying as little as possible in taxes themselves
• consolidation of political power -- union-busting is a two-fer, as they get workers disempowered both on the job and in the political sphere. But power-grab is also at the heart of the Voter ID laws, which seek to disenfranchise groups that tend to vote Democratic: African-Americans, the poor, people with disabilities.
• rolling back environmental protections -- after all, what corporation wants to pay for that sort of stuff?
• tax cuts for the wealthy and -- of course -- corporations.

ALEC's secret database of agreed-upon cookie-cutter legislation was laid bare this summer by the Madison-based Center for Media and Democracy, at the ALEC Exposed web site. The legislation templates are no longer secret -- it's no use to deny the extent to which this legislative assault on the average American (the 99%, if you well) is coming directly from the corporate string-pullers via ALEC.

I've had rather a dry spell of political writing since the summer senatorial recalls here in Wisconsin. That long, exhausting effort did not manage to change the majority in the Wisconsin State Senate, though we flipped two seats such that the Republican majority is a single vote, 17-16. The slightly-swingy nature of that single vote majority has at least curbed a few of the worst proposed excesses, but isn't enough protection against the overall Walker juggernaut.

Since the summer recalls, the Medicaid slashing that I wrote so much about in February has rolled forward toward predictable devastation. The Wisconsin budget bill set the terms -- over $500 million in cuts, to be specified later, and the the full legislature wouldn't vote on the specifics of the cuts even if they went against current law. Those cuts have now been specified and voted in by the Joint Finance Committee, along party lines of course. The proposal agreed to by the JFC is projected to result in nearly 65,000 people losing Medicaid coverage, due to things like changed eligibility or income limits, or higher premiums, or if their employer offers insurance (even if it's expensive and crappy and they can't afford it -- I'm looking at YOU, WalMart.) To go into effect, though, the plan needs to get approved for an exemption/waiver by the feds, because it falls afoul of some current federal requirements. If that approval is not forthcoming by December 31 -- an entirely arbitrary, self-imposed deadline -- they'll implement instead a plan that kicks off a different 53,000 people.

It didn't have to be this way. There was an alternate state budget proposal, called the Wisconsin Values Budget, that called for a much narrower Medicaid cut. And as an alternative to the proposal passed by the JFC, a Madison organization called ABC for Health proposed an alternative called the Pathway Plan for 2012, seeking a sustainable solution that actually expands the health-care safety net instead of devastating it.

Contrary to my initial personal fears, Joy's current services have remained largely unscathed. Her funding through the Children's Long-Term Support waiver has been frozen at current spending levels but not reduced; her Katie Beckett MA funds that cover diapers and co-pays were not cut either. The two-year freeze on enrolling new participants in the Family Care long-term care program may have an impact on her future, but whatever is up with that reality when she needs it is a long ways down the road for her.

But that doesn't mean that I had no reason to take Joy and testify at a Medicaid hearing at the Capitol the other Thursday. (The Joint Finance Committee declined to hold a public hearing, so the only option was to testify before sympathetic Democrats who aren't "in power" right now.) On the one hand, I didn't have personal testimony of impending healthcare disaster. On the other, "then they came for me, and there was no one left to speak for me..." In addition, I could bear witness as a member of my congregation, who have signed on as members of the Save BadgerCare Coalition (yes, we can do that -- it's issue-based, not party- or candidate-affiliated.) So I spoke my opposition, with my daughter on my lap.

And on Saturday, our whole family took to the streets with tens of thousands of our closest friends!

This was Joy's biggest rally so far. It wasn't until after the largest of the protests in February that we figured out a routine to get Joy downtown with her jogging stroller to protest and lobby. Now we're old pros, and so was she. We drove from our house right up to the edge of the rally within minutes, finding free parking just a couple of blocks off the Square! Then into the jogging stroller with Joy, and off we went, well prepared with stimmy-toys and snacks and Kleenex, along with food-drive donations ("Can" Walker!) and protest signs and camera. And warm clothes, of course. Would it be a Wisconsin protest without coat and mittens?

I had already signed the recall papers on November 15 (Day 1) for both Walker and Lt. Gov. Kleefisch -- if we don't recall them both, there's the possibility that Walker could resign before the election and Kleefisch would move up. Can't let that happen! However, JoyDad hadn't signed yet, and was looking forward to the opportunity. Lo and behold, there were signature gatherers right at the corner of the Square, so we could take care of that crucial business immediately.

Then it was off to circle the Square with the marchers, and revel in the energy and creativity. For example, we made sure to be on the State Street corner at 12:30 to catch the flashmob dance to "Forget You" (I see you causin' lots of trouble in the state I love, and I'm like, FORGET YOU!)



Then there were the signs, from the familiar...

to the artistic ...

... to the potty-humor!

My sign had two sides. I've gotten so experienced at hand-lettering, I don't even need to draft in pencil anymore!

And then there was Rose's sign:

Joy didn't carry a sign, but she did carry the whole event off with class. The entire hour and a half we were out there, she rode uncomplainingly, playing with Mardi Gras beads or pine needles and observing all the ruckus. The few times she tried to reach for someone's long hair or beaded fringe, folks were gracious.

The highlight of the event for Joy was encountering one of her favorite school staffers, along with two of last year's staff. You should have seen her face light up! And then she wanted to go right into playing some of their favorite games. Just a delight to see Joy welcome someone out of context and bring the context right along for the ride.

Overall, it was a remarkably satisfying event. And when we got home, we learned there'd been an announcement at the rally: from Tuesday to Friday, 105,000 recall signatures had been turned in, out of the 540-some thousand needed (though we'll be collecting 700,000 or more to have a cushion.) That's in just four days of the 60-day window, and that's without a weekend!

I think we're going to make this recall happen, and I can hardly wait. Recall Walker!

Lucky

My older daughter Rose and I watched the movie Temple Grandin, starring Claire Danes as Temple, on DVD the other night.

Temple Grandin may be the best-known person with autism in the world. She's a professor of animal science, a wildly-successful designer of livestock handling equipment, and also an author & lecturer on autism. I had the privilege of hearing her speak in the spring of 2010 at the Autism Society of Wisconsin annual conference. (And I got to meet her and get her autograph!)

Rose was fascinated. Very impressed to see Temple's signature on my copy of The Way I See It, inscribed "To [JoyMama]." Amazed at how Claire Danes, whom she'd seen as Beth in the movie Little Women, could become this completely different person. (Temple was amazed too -- as she said at the conference talk, "Claire Danes became me in a way that was really weird!")

Joy wandered in and out of the room as we watched, but Rose was engaged with the movie all the way.

She wondered whether Joy sees the world in any of the picture-flashes that portrayed Temple's thinking, or the superimposed architectural designs.

In the scene where Temple's mother is told of the autism diagnosis and advised to put her daughter in an institution, Rose asked questions and then made the connection with the Where's Molly? story we saw on TV a year ago.

She was distressed by the way Temple's classmates treated her, and shared that she'd seen kids make fun of Joy at school a couple of times. But she allowed as how she gets teased from time to time herself. I pointed out that when Temple was in school, and even when I was in school, kids with developmental disabilities simply didn't get to go to the same schools that typically-developing kids attended, if they even got to go to school at all.

Rose thought about that. "It's so lucky..." she said...
and I expected her to go on to say how lucky Joy is that she gets to go to school with everyone else...

"...for Joy's class that they get to know her and have her in school with them!"

Princess Adventures

I started out as one of those moms who was going to take a stand against the whole princess-i-fication of little girlhood. No Disney-princess videos or clothing or toys or other assorted stuff for my money, thanks! We tried to hold off on the Barbie thing too. But the culture is persistent. There are ads and Happy Meal toys and sweet relatives who give Christmas gifts, and Rose's first Barbie that came when she broke her arm (by way of an emergency-room staffer)! So the princesses have encroached, and I kinda learned to live & let live.

And this year, the princesses saved my bacon for Halloween.

For some reason, Halloween costume ideas didn't flow freely this year. We've had some really cool themed-costumes where we dressed the girls in a coordinated way, like last year's pirate wench (Rose) and hook (Joy). Last year's Halloween post took a trip down costume memory lane, as I perused old photos with my college classmate whose daughter Elizabeth is our regular trick-or-treat companion.

We'd sort of settled on costumes whereby Rose would be a soccer player -- just wearing her soccer gear -- and Joy would sport a soccer ball on her sweatshirt. But then Elizabeth's mom made an offer we couldn't refuse. She just happened to have princess dresses from two of Elizabeth's previous Halloweens, a magnificent home-made Snow White dress and an elegant dress from a couple of years later. Would these possibly fit our girls?

Oh yes, and perfectly.

The Snow White dress was comfy cotton, just the thing for a kiddo who gets distracted by too many furbelows. Though at first glance Joy doesn't look just thrilled in the above pic, she's actually mugging for the camera here. That grimace is her current "cheese" smile! (I love it that my daughter should have figured out a "cheese" smile!)

Our trick-or-treat group was a large one, between the Joy-family, Elizabeth and her mom, J-Cat and his sister and parents, and two of this year's LEND trainees who are doing a family-mentoring experience with us to get a glimpse into what it means for our family that Joy is who she is. The noisy crowd didn't seem to bother Joy, though. She was remarkably chipper and cooperative as we traipsed up one side of the dark street and down the other, making a fine effort to convey candy from the proffered baskets into her plastic pumpkin, and ringing the doorbell with minimal prompting when it was her turn. Of course it took a parent keeping a solid hold on her hand and guiding her with the group every step, but she didn't protest a bit.

In fact, she didn't even protest when the clock struck midnight, and the prince pursued her down the flight of marble stairs leading from the palace, and her glass slipper fell from her delicate foot...

You may think I've got the wrong fairy tale here, but bear with me.

As JoyDad shepherded our princess toward the second-to-last house we were going to take her to, he suddenly looked down and noticed that Joy was missing a shoe. It was hard to catch in the darkness, because she was wearing dark pants under her dress, and dark socks, and the little velcro tennies were a dark brown. But somewhere along the line she had stepped out of a shoe, and trotted on entirely uncomplainingly!

You can perhaps imagine how it looked then, as our large party suddenly began to retrace the route. It was only up and down one block, but we didn't know how long the shoe had been gone, we didn't have flashlights (duh), and there were nice brown autumn leaves all over the place. We ended up back at home with a single-shoe princess, and even two more search party forays with flashlight did not find the elusive footwear.

Well, Joy ended up playing back indoors, cheerful as could be, while I chatted a while further with the LEND trainees. Rose and company went on trick-or-treating -- she eventually brought home a HUGE stash of candy, apparently having told at each house the sad story of how her sister-princess had lost a shoe and had to stop trick-or-treating and so could I please have extra candy for my sister?

Then after the trainees had gone, and the house was still, the doorbell rang once more. It was the prince! And the royal grandma! Well, OK, it was one neighbor each from the two houses in between which we had discovered that the slipper had been cast. The two of them had gone out in search of that elusive little shoe, and had found it for us!

And it fit perfectly, and we all lived happily ever after.

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

Summer Activities (and, Budgets are Moral Documents)

Now that school's out, I'm getting to spend a lot more time with my girls!

Yesterday started with a taunt left on our deck railing, from one of the squirrels who've been raiding our strawberry patch:

Our top two morning activities were puddle-stomping and Capitol-visiting.

It was a sunny day, making for some excellent reflections.

Then after we got cleaned up from that little escapade, we headed down to the Capitol, where the Senatorial rubber-stamp was about to be put on the devastating Wisconsin budget, all-cuts-all-the-time (major tax cuts for corporations, major cuts to schools and health care and middle-and-lower-income families, zero shared-sacrifice for those at the top of the heap.)

The Capitol was fairly quiet at mid-morning, other than a signficantly beefed-up police presence. We got one kindly officer to take our picture beside Wisconsin's replica of the Liberty Bell. Here's the plaque that sits next to it:

The top line reads, "Dedicated to you, a free citizen in a free land." Oh, the irony, after having had to go through a security gauntlet to get into the Capitol, designed solely to squelch protest (they'll be removing the metal detectors soon, within days of the budget taking effect.)

We felt the "freedom" gut-punch once more as we attempted to visit our Senator's office. We walked past Senator Risser's office door by accident a couple of times, because the 3-officer law-enforcement presence obscured our view of the names on the door. (Risser's office shares a front door with Senator Leah Vukmir, from across the aisle). When we finally figured out that this was where we wanted to be, and asked the lawmen if we could please enter, they asked us if we had an appointment. Well, no, we didn't -- we're used to dropping in unannounced for visits with the staff, that's how things operate in Senator Risser's office! No ma'am, we're not supposed to let you in without an appointment.

I'm glad I'm a known quantity in my state senator's office, for I was able to send in my card with one of the officers, and then the doors swung wide. After our visit, one of the Risser staffers came out to speak to Senator Vukmir's palace guard the lawmen, and let them know that Senator Risser's office wants to speak with any constituent who shows up, appointment or no!

Next we took the elevator up, to wander around the observation deck at the base of the dome, and look out over the city and lakes from all angles.

And then we went down to the Square again, and left some messages for anyone who wanted to read them, until the next rain washes them away.

Budgets are moral documents. And the budget that passed in Wisconsin last night badly, badly fails that standard.

(Funny how sidewalk chalk is cute when it's a hopscotch frame or child's artwork, and VANDALISM! if it's got certain political content.)

Perception Creates Reality

I note that my posts of late have been very upbeat. There is plenty in Joy's life, in our lives, to feel upbeat about! Joy has continued to do some amazing things as spring transitions into summer. Here's a sequence from just yesterday morning that I snapped while she was playing independently with her musical gears-toy, experimenting all-on-her-own with placing things on the central gear to see them spin.

A stack of gears that she built herself:

The bouncy-ball she got at the drugstore the other day:

Her echo-ey microphone:

These are true stories that we tell, that encourage us to keep going -- despite the fact that she's pulled enough hair out of another patch on her head to make us consider going with the buzz-cut again. And the fact that she's been apparently-randomly refusing food, and making those protests by suddenly spit-spraying large mouthfuls right into our faces.

Here are some more lovely true stories from yesterday morning, as we went to the Capitol Square once more to protest the impending disastrous budget bill:

I found myself being interviewed by a reporter for our local paper, who was intrigued by my "Budgets are Moral Documents" sign. Here's the interview as it was happening...

I got a chance to put in a plug for community long-term-care:

[JoyMama] pushed her daughter in a stroller and carried a “Budgets Are Moral Documents” sign. She said her family would be harmed by proposed cuts to state funding for the long-term care of people with disabilities.

“We keep hoping folks who have acted as moderate Republicans in the past will listen to their consciences,” she said.

Then Rose found, to her delight, a group of protesters hula-hooping for justice! An intern from a local paper filmed her and Twittered the video out into cyberspace -- Rose is the one on the left doing the stand-on-one-foot tricks. (Sorry 'bout the ads.)



Then around the corner came a stream of educators marching against the education cuts in the budget -- and who should be leading the march but Joy's special education team! So Joy and I left Rose with the hula-hoopers
while we made a circuit of the Square in the company of Joy's beloved teachers.

It was a beautiful day. It was good to be with sincere, creative people, determinedly protesting the trainwreck of a budget and other legislation that is being crammed through double-time, in a little-used procedure called "extraordinary session" that has NEVER been used to passed a budget before.

And then we learned that, late in the day, amazingly-coincidentally in the nick of time, the Wisconsin Supreme Court (along partisan lines) had overturned a lower court's ruling that the so-called "budget repair bill" violated the state's open-meetings law. The conservative members of the supposedly-non-partisan Supreme Court, bought and paid for by floods of corporate campaign cash, argued that the courts could not make the legislature abide by laws governing its own procedures unless those laws were part of the Constitution. And the open-meetings law is just a statute, not part of the Constitution. [I think I'm understanding this right. It's very tangled.]

How did we come to this?

Well, perception creates reality. And the wealthiest corporate interests of this country have bought the perceptions of anyone who gets their information from Fox News, or right-wing radio, or conservative campaign commercials. They've ridden those perceptions to electoral victories that then allow them to pass rapid-fire, coordinated, cookie-cutter corporate-written legislation via the American Legislative Exchange Council (ALEC).

And they've effectively spread the lie that the coordinated propaganda and fear-mongering over at Fox News is somehow equivalent to how the rest of the news networks run...

I am still hopeful about the recall elections in Wisconsin, that we can flip the state senate this summer and temporarily stop the bleeding. If you are at all inclined to contribute to this effort, you can do so via the Act Blue fundraising page.

But I am feeling very low right now about the powerful, incredibly wealthy forces that brought us to this point, and the alternate propaganda-reality that they have created.

Northwoods Adventures, May 2011

Here's the long-promised roundup of our Memorial Day at the lake.

Balloons for the birthday girl:

And for her big sister:

We walked in the woods:

And blew bubbles on the pier:

And played with the bubble-swords on the screen-porch (thank you AuntLO and UncleDO for the gift of bubbly entertainment!)

And enjoyed the heck out of pine-needles (so soft! so fragrant!):

We had unusually long stretches of independent play with the ring-stacker:

And lots of people-peek play with the pompom:

And the rocking chair:

Rose learned to cast with a borrowed fishing rod:

And caught a 20-inch northern pike off the end of the pier! (Actually, Rose hooked it, JoyDad landed it, and GrampaK de-hooked and released it. Rose was not interested in even get near enough to "her" fish to be photographed with it.)

Very tame, so far. Minor adventures only. Nothing nearly so eventful as last year...

Until we set out for home.

We'd decided to try & save some time by going out the "back way," down a remote logging road that had recently been widened a little by a new logging operation. We actually drove out to town that way on Monday, so we knew the road was passable (if a little muddy & exciting to drive.) We and GrampaK were the last ones out on Tuesday -- he went one way, we went the other.

And before we'd gotten more than a couple miles out, we zigged where we shoulda zagged -- and the passenger wheels sunk deep into soft mud at the side of the road.

"Everybody out," declared JoyDad, after the first attempt at backing up went nowhere.

I swung my door open... and it barely cleared the mud.

So we all clambered out the driver's side doors, and I spent the next 10 minutes holding Joy and getting bitten by mosquitoes while JoyDad got muddier and muddier trying to dig out (without tools) or toss something under the wheels for traction (a losing battle.)

Finally we decided that someone needed to hike out. Probably about 3 hours walk to the nearest house. We only had the one cell phone (mine) and of course no reception back-of-the-beyond as we were.

So the mud-spattered JoyDad set off down the road, glancing down at my cell for "bars" about every ten steps. I piled back into the car in the mud with the girls, out of mosquito range, to settle in to try & entertain them for who-knew-how-long. With no means of outside communication whatsoever.

Rose and Joy were two different entertainment challenges. Rose was aware enough of the situation to have some imaginative worries, and kept asking when Daddy was coming back. (As if I knew. He'd set out at 8:45. In my mind, the earliest he could possibly return with help would be 11am, and that was terrrrribly optimistic. But I didn't name a time.)

We snacked. I read chapter after chapter from Little Women. Joy watched DVD -- how long would the battery last? The sun started streaming through the trees onto the car, but I didn't dare run the air for more than 5 minutes every half hour, for fear of killing the battery too...

And then, just at 11:00, a tow-truck appeared through the leaves.

I didn't remember to get out with the camera to record the sunken car, but here's how it looked just after rescue:

We had guardian angels watching over us that day. JoyDad got a shoulder-tap from the first one about 15 minutes into his hike. He was watching that phone for the non-existent "bars" when all of a sudden... it RANG! Still no bars visible, but just enough connectivity that it was able to let him know that there was a message waiting.

That message was from the angel -- because I almost NEVER use my cell unless I'm setting up a specific call. Very few people have the number, and even fewer use it unless we've set up to speak. And yet, someone from home-town had called, just about the time we were getting stuck.

If JoyDad hadn't gotten that voice-mail alert, he'd never have known about the patch of connectivity back there in the woods. As it was, he was able to call 911 and be connected to a towing-company dispatcher and get help on the way.

And then he walked out of the connectivity and didn't hit another patch before finally intercepting the tow-truck, about two hours after his hike began.

Second angel was a mechanic in Merrill, Wisconsin, who was able to take a look at our vehicle when it started making awful noise en-route, and (instead of taking us for a huge sum of cash in our distress) assured us that we'd make it home as long as we didn't accelerate into any sharp turns.

I'll spare you the account of the rest of the trip -- it was long and warm and kinda cranky -- but we made it. And even the total expense, between the tow and the next day's necessary repairs, weren't nearly as awful as they could have been.

Wonder how next year's trip will go (she says with fear and trembling!)

Mother's Day 2011

What a lovely Mother's Day!

Rose painted me a watercolor card. Talent, the girl's got talent!
(I Photoshopped out her signature & JoyDad's for anonymity's sake, but Joy's signature manages to be pretty anonymous with no help from me.)

JoyDad got me a box of chocolates. The good stuff. I tried to share a piece with Joy, who nibbled a corner but then pushed it away. (Aw, shucks, had to eat it myself.) She was thrilled to be given the chocolate-brown ribbon from around the box to paly with, though.

Then we had home-made waffle-breakfast with Rose's friend Elizabeth and family, complete with maple-syrup and the last of the frozen strawberries from 2010. Spring came late this year, but the first strawberry blossoms did open this weekend.

Then we got out the bouncy castle for the first time this season. Joy was delighted. She bounced and bounced, both on her own and in the middle of a boisterous ball game between Rose & Elizabeth. I had to remember how tentative Joy was about her new castle when we first bought it almost three years ago. Some gifts she just has to get used to, maybe grow into. (Maybe if I plied her with high-end chocolates at regular intervals, she'd learn to appreciate them? The world may never know...)

And if all that weren't enough, the whole family went downtown to the Capitol Square for an activist Mother's Day picnic event and Solidarity Singalong. I made a new ALEC sign:

This one is protesting yet another piece of ALEC legislation that is fast-tracking its way through the Wisconsin legislature: AB110, the "Special Needs Scholarship Program Act." (They say "scholarship," I say "voucher.") Parents whose child has a public-school IEP would be able to take that child's share of public-ed tax dollars and spend it to send him or her to private school -- losing all their IDEA rights in the process, with no guarantee of any special-ed services at the private school. Though some families would surely benefit (most likely middle-to-upper income families, because the family pays the difference between the voucher & private school tuition), the big winners are those with corporate and religious interests in pushing private schools, and our public schools would be the big losers. (Here's a document of myths and facts about the bill.) So many things to protest, happening so fast!

But that's mother-commitment in Wisconsin, these days.

I hope everyone had a wonderful Mother's Day! I'll close with a salute in the form of a Facebook status-post that was making the rounds on Sunday:

For all the moms out there who had to wait longer (or still wait) to hear a first word, who spent more time in doctor's offices with their child than on playdates, who find joy in the uniqueness of their child even when others don't get it....For the moms who promote the ABILITIES and gifts of their child everyday, we salute you.

What Rose Did On Her Spring Break

I'm happy to report that we survived both spring break, and the following week! Joy didn't have too much trouble with the break itself, but the first few days back at school last week were reportedly rather rough. Fortunately there were lots of giggles in the latter part of the week, both at school and at home.

I didn't quite realize how much we had done, until Rose told me about an assignment for her class. They were to write an "A to Z" poem in rhyming couplets about what they did during their break! Our spring break was a "stay-cation," with only a day-trip on Easter Sunday, but somehow we managed to pack a lot in. As evidenced by the poem that resulted! (Spelling is original to the author; I did change the one name in keeping with this blog's pseudonymous practices.)

A to Z Spring Break
by Rose
A is for April the month of Spring Break
B is for Baskets we fill with eggs that are fake
C is for Candy that fills the fake eggs
D is for my aunts Dogs who walk on four legs
E is for Egg hunt out on the grass
F is for Family who's love always lasts
G is for Get togethers with all my friends
H is for Happiness 'cause the fun never ends
I is for Illinois the state I traveled to
J is for Jelly beans that are fun to chew
K is for Kugel which I ate at Aunt Lou's
L is for Looking to buy some new shoes
M is for Matzoh a passover food
N is for Nice when I'm in a good mood
O is for Oven for baking bread
P is for Press confrence where speeches are said
Q is for Quiet time with books to read
R is for Running outside at great speed
S is for Sister who's really great
T is for T-shirts to decorate
U is for Under the tree with my sister
V is for a Visit with Senator Risser
W is for Walking the Autism Walk
X is for X-tra time to talk
Y is for Young plants begining to grow
Z is for Zoo where we didn't quite go.

Yes, the girls and I attended a press conference in the Senate parlor at the Capitol, followed by a meeting with our state Senator in his office to lobby about education and autism insurance. An unforgettable spring break civics lesson! Joy rode in her jogging stroller, and happily played with a cheerleader pompom and ate pretzels while all the action was going on.

And we did plan to go to the zoo one morning, but had a schedule change at the last minute. Oh well. We'll look for a nice spring-like zoo visit day soon.

Random Thoughts

It hasn't been the kind of week that serves coherence. So, today on Elvis Sightings, a heaping helping of stream-of-consciousness.

• We all went to Grandma Judy's wake last night. It was so good to be with family, and to take part in this shared ritual of closure. Neither Rose nor Joy had ever encountered an open casket before. But Rose bravely went up to the front to "pay her respects" as we had discussed with her beforehand. Joy went up a little later in my arms. I think she might have been a little confused, as she reached out to Grandma Judy with an uncertain smile. I told her that it was time to say "bye-bye." She gave a small wave and an adorable spoken "bye-bye."
• Goodbyes are so hard.
• We had brought all sorts of tools and tricks to get the girls through the evening, from a portable DVD player & Baby Einstein to Rose's sketchpad and her little ZhuZhu-pet video game. But it was AuntieS who saved the day. She brought a brand-new travel set of the game Guess Who? that Rose could play with her cousin. For Joy, she brought one of those soft plastic bath-scrubby-poufs with a terry-cloth ducky in the middle. Once again AuntieS scored big, as she did with the curly-ribbons at Thanksgiving time. Joy spent the rest of the evening watching video and happily shredding the bath-pouf. Simply perfect.
• JoyDad will represent our little family today at the memorial service and burial. It didn't make sense to try to chivvy the girls through a day as long as this one will be. I'll be there in spirit, though.
• This all comes at the end of a long, hard week. It's been on my heart to join the amazing huge creative peaceful protests at the Capitol building, and re-fill myself with their hope and energy, but I've been unable for over a week. Schedule is part of it, and sickness even more. Both Rose and Joy were home from school most of the week fighting the flu, and I was trying to care for them and fight pneumonia myself. Thank heaven for antibiotics (for me), and for speedy recovery (for all of us.)
• The events of the day in Wisconsin continue to seep into most everything we do. When I went to the deli counter last weekend, wearing my "Save Medicaid" sticker on my coat, the guy at the counter asked "So, what can I get for you? [pause] Besides a new governor?" When I went to the doctor with my complaint of sleeping difficulty and on-rushing bronchial issues, he asked me whether there was a movement to recall this governor who has pushed forward this extreme agenda so very far in excess of anything he'd campaigned on. I left with prescriptions for the aforementioned antibiotics, a sleep aid, and the doctor's personal e-mail address -- promising to send him the website address where he could add his name to the pre-recall database at http://www.unitedwisconsin.com/. (In this state an official must hold office at least a year before a recall can take place; at that time, there is a 60-day window to collect sufficient signatures.)
• Healthcare workers and professionals are marching in support of Medicaid in Wisconsin today (Saturday), starting at 11am on campus at Library Mall. I wish I could join them, but I'm on childcare today. I'll be thinking of them, and looking forward to seeing pictures.
• I was on childcare last Saturday as well, while JoyDad and brothers were helping GrampaK get some things taken care of. Let me be clear, I am ever-so-willing to hold up my end and do what needs to be done! but last weekend it meant that I ended up forgoing the opportunity to be in this political ad: http://www.youtube.com/watch?v=ecsX7HxRork. I have not embedded the ad-video here because it is highly partisan, and frames the events in Wisconsin as a "war," terminology that I would personally prefer to avoid. But it's a powerful piece, and I would very much have liked to add my story and get a mention of Medicaid into the ad, something that did not happen in my absence.
• However, it's not as if I'm lacking a voice this week. I've had the opportunity to have some of my writing published on a national level (under my real name, so no link here, sorry!) And that feels good.
• After several weeks of high intensity, I do feel now that the initial frantic urgency of "Medicaid emergency and nobody even knows!" is receding. People do know now, and many other voices are being heard. It's time to take a deep breath, and move things to a level more manageable for the longer term.
• Right after I write just one more blogpost / Facebook status / protest letter...

Medicaid in Wisconsin: What's At Stake? How Can I Help?

Rose and I held signs at the front of the room at a press conference yesterday. The event was held to draw attention to the stealth attack on Wisconsin Medicaid in Governor Scott Walker's "budget-repair" bill. Several hundred people overflowed the room, braving freezing rain to come out and show support.

"Stealth attack" is not too strong a term. As I've written before, the Medicaid-related part of the bill is flying almost entirely under the radar, overshadowed by the outrage over the attempt to break public-employee unions (including public school teachers & librarians, setting the stage for immense cuts in education to come.) Now that events in Wisconsin have hit the national news, the story line is still all about the unions.

There's an excellent new article in the Capital Times called "Why Such Little Outcry Over Bill's Impact on Medicaid Programs?" (The same reporter interviewed Rose after the press event. We shall see...) It's been a complex story to try & tell, because the upcoming cuts aren't actually in the current bill. What's in the bill is the unprecendented and undemocratic authority to make future cuts behind closed doors, with neither legislative oversight nor public input.

Now that the press event has given me an eagle-eye view of who all could be affected, I'm more appalled and worried than ever!

Medicaid, otherwise known as Medical Assistance (MA), provides a health-care and community support safety net for the most vulnerable in our state -- seniors, people with disabilities, people with mental illness, people with low incomes -- using a combination of state and federal funding. Over 1.1 million people in Wisconsin, around 20% of our state's population, use some form of Medicaid. Numbers have been on the rise due to the impact of the recession.

The newly-formed Medicaid Matters Alliance, the organizers of the press event, provided the following information, which I quote here directly with a few asides:

• 775,000 children and adults have basic medical coverage in BadgerCare
• 90,000 Wisconsin children and adults with severe mental illness use Medicaid services
• 9800 children and young adults (0-21) with severe disabilities utilize Medicaid community based supports and medical coverage [Personal note -- Joy is among this number]
• 20,500 people with developmental and physical disabilities stay independent at home and in their communities with Medicaid funded supports [Personal note -- Joy will be among this number in the future, if the program is not eviscerated]
• 18,000 seniors stay independent at home and in their communities with help from Medicaid
• 90,000 Wisconsin seniors rely on SeniorCare for affordable prescription drugs

We don't know yet who amoung those 1.1 million will be targeted in the upcoming cuts, nor to what extent those targeted will be hit -- and if the bill passes, we won't know until after the cuts have been made and it's a done deal.

The speakers at the event were varied, passionate, compelling. We heard from:

-- A retiree for whom Medicaid is the only thing that has allowed her to scrape by and live in her own home, after the recession decimated her retirement savings.

-- a woman who has spent half her life with quadriplegia due to a car accident, whose active and productive life in the community is at risk (and who would rather die than be warehoused in a nursing home)

-- several people for whom Medicaid is a lifeline for aid with mental illness issues, either for themselves or their children

-- a woman who lived with an abusive partner for 12 years, who could not have taken care of her injuries without MA, nor could she have left him without MA healthcare for her children (2 of whom have disabilities)

And the stories kept coming. This has the potential to devastate SO many people, each with their own story that has brought them to need medical-assistance help.

There should be thousands of people storming the Capitol on this issue alone!

But the word is only starting to spread.  And the people whom this most affects -- seniors, people with disabilities, people with mental illness, people with low incomes -- are not the ones with the resources to be easily able to hit the streets.

And if Governor Walker had his way, the stealth attack on Medicaid would have already been passed by now.

How You Can Help

People in Wisconsin: Governor Walker is saying that he's only hearing from people who support his position. Contact him and tell him that you oppose the undemocratic Medicaid process changes, and that they need to be removed from the bill. 608-266-1212, or govgeneral@wisconsin.gov.

There are four Wisconsin state senators who have yet to state a position on the bill. If you live in their districts, contact them with the same message as for Gov. Walker -- or if you know anyone who does live in their districts, get them to make the contacts! Click the links for contact information:
-- Sen. Dale Schultz of Richland Center, District 17
-- Sen. Michael Ellis of Neenah, District 19
-- Sen. Sheila Harsdorf of River Falls, District 10
-- Sen. Robert Cowles of Green Bay, District 2

For Anyone: To get updates directly from the coalition fighting to preserve our voice on Medicaid in Wisconsin, sign up at
-- "Like" the Save BadgerCare Coalition on Facebook or visit their website.
-- Join the Medicare Matters Alliance Google Group

Anywhere in the US that the Wisconsin story is being reported at all, a letter to the editor of your local paper would be a welcome help.

And finally, a fun morale-booster action step: Buy pizza for the protesters! Ian's Pizza by the Slice just off the Capitol Square, 608-257-9248, has been getting orders in from all over the country (& world). JoyDad and Rose and I availed ourselves of the pizza-generosity after the press event. Good stuff, great morale-booster!

Thank you so much for all you do. Keep spreading the word, friends!

P.S. TinyURL for this post is http://tinyurl.com/6k3hro3 -- please tweet widely!

(Tomorrow's post: Joy's friends make signs on her behalf)

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