Tuesday, February 24, 2009

Hoop Dreams

OK, I got some of the leftovers off my plate. Drew up a press kit page for the handbells web site, revised a document regarding Joy's strengths and our ongoing concerns for her upcoming IEP, and (this is a big one) got the files sent to the printer for the book of my late mother's autobiographical writings that I've been working on editing.

Now I can write about the weekend.

Our big event this weekend was our church's annual winter retreat. Every February we gather at a retreat center by a state park about an hour's drive from here for a weekend of fellowship and a Sunday morning worship service. There are games, there are crafts, there are communally-prepared meals, there's a talent show, there's sledding and skiing and hiking. It's a wonderful time.

February 2008 (i.e. last year's) retreat was a disaster as far as Joy was concerned. She was still slumping from a big regression that had started that Christmas, which stole her language and affected her behavior. She was having several knock-down seizures a day, each of which took an hour of intense comforting to recover from. In retrospect, we think there may have been a virus involved too somewhere along the line. At any rate, we took her to retreat anyway, and she just got more and more miserable as we went. In between seizures she went tearing around the center fussing and leaving a trail of destruction. We were hoping that naptime would be at least a break, but instead of napping or playing quietly, she stood up in her tented pack-n-play and screamed bloodly murder. For ages, with no sign of stopping. Finally JoyDad took her home. I stayed at the retreat with Rose, exhausted and wrung out like a limp washrag. It was a hard time.

This year was a huge contrast.

Touch wood, y'all, but Joy hasn't had a knock-down seizure since mid-September. That was the first major thing. Second, she did not have the Christmas regression. Third, her boundaries have improved and she's more willing to hang out quietly on my lap while something else is going on. Fourth, her mood is happier on the whole.

With this background, I was willing to even take the girls to retreat solo on Saturday morning. (JoyDad came up later that afternoon; he had a memorial service to attend at noon.) Joy was contented throughout the slightly nerve-wracking trip as the snow was falling pretty hard. When we arrived, we had a friend all lined up to watch Joy while I unpacked the car. Joy hung nicely with me through the next event, which was a group game involving speed-singing of hymns and competitive reading of Bible verses all full of unpronounceable names. Much hilarity!

Since Joy has been skipping naps most days anyway, we didn't even try to put her into her travel tent. Instead, another friend volunteered to watch her for a while so I could go participate in a book discussion. Funny enough, the book discussion actually was sparked by this humble blog, from when I posted back in November about Tracy Kidder's book Mountains Beyond Mountains. A friend from church who keeps up with Elvis Sightings was intrigued by my recommendation and organized a group of people to read the book and discuss it at retreat! It was a fine conversation, with thoughtful articulate people, several of whom had been to Haiti themselves and/or work in medical professions (the book deals with a charismatic physician whose primary work is among the poor in Haiti). All in the context of beautiful snow falling gently outside the huge windows.

When I got back to Joy, her baby-sitter -- who has a grown son with a spectrum diagnosis in context of a different genetic condition than Joy's -- said they'd enjoyed their time together. "She's very smart, you know," she told me. Bless her for seeing it!

Our smart little girl kept it all together despite the lack of nap. She even surprised us at dinner time by eating her entire helping of macaroni with her spoon, with no prompting from us! She usually digs in with her fingers.

But when are we going to get to the hula hoops, you ask? Well, I'm glad you brought that up.

I mentioned earlier that the retreat features a talent show. This year, Rose decided that she wanted to do a hula hoop act. So she and JoyDad concocted a number wherein JoyDad played Wipe Out on his electric guitar. She has never taken a dance class, and I (not a dancer by any means) have been her only hula hoop teacher. However, she has such a sense of rhythm and has done a bit of group dance routine stuff in gym. And with those natural tools, she put together a wonderful piece where she shimmied and strutted back and forth with that hula hoop a-swirling, dropped to her knees and came back up repeatedly, and then let the hoop drop to her ankle and hopscotched it around with the other foot. All in perfect time to the screaming guitar.

The crowd went wild.

Video of this amazing act does exist, but we've got some technical hurdles before we get it onto YouTube. If you'd like me to e-mail you the link when we get it ready, say so in the comments or send me a message.

But that wasn't all. See, Rose decided to share her hula-hooping delight in another way. She brought all seven of her hoops along, and made them available in the main gathering room for the use of all the retreat participants. (I did promise that I'd replace any breakage.) It was amazing how the hoops resonated with all ages and shapes of people. From the short to the tall, from the curvy to the beanpole, from the toddlers to the highschoolers -- male and female both! -- to the highschoolers' parents, a huge range of folks got into the act. The height of the hilarity happened after the post-talent-show ice cream feast, when JoyDad plugged his guitar back in and played music to hoop by: more Wipe Out, Johnny B. Goode, one song after another after another. He played till he started to wear out the fingernail on his pick hand!

Well, some of the attendees were joking that hula hooping might lead to... DANCING! (verboten among the more conservative Mennonites, but this crowd is pretty far out on the progressive end of the Menno spectrum, as it were.) And after JoyDad unplugged, sure enough, out came a couple of iPods to plug into the sound system. Line dancing! Cotton Eye Joe! Jump Around! My fellow Mennos and I boogied till I think I strained every muscle in my body that hadn't already been hula-hooped out of whack.

Then I played Boggle till midnight. Which made 20 hours straight of wakefulness, seeing as how Rose had awakened me at 4 am Saturday morning to present me with one of her two front teeth which she had finally wiggled out.

Then Joy woke up at 2:30 and started commenting loudly... I'm afraid I don't remember much of the next morning's worship service, though they tell me I was physically present. It was quite the night.

I actually did make it to the regular evening worship on Sunday too, after everyone had headed home and sorted themselves out. Rose surprised me during the sharing time part of our service ("joys & concerns"). She stood up on the chairs and declared loudly that she had a joy. She wanted everyone to know she was so happy that people had so much fun with her hula hoops at retreat.

There. As JoyDad commented on my last post, this is probably the only blog on the Interwebz that combines hula hoops, dancing Mennonites, and screaming guitars!


pixiemama said...

I'm glad Joy is making such progress. Amazing!


mama edge said...

Video! Hoop-de-do! I'm glad that, even though you were SO missed out east, you were having a wonderful time in the Midwest.

WORD VERIFICATION: Velizoon (as in, "I hope I will see you velizoon!")

Anonymous said...

Thank you for a fabulous post, JoyMama! It is a joy to read about Joy! - and all her family! and all her church community!

I'll wager all readers would like to see the video and hope you will just post the url.

Reading Elvis Sightings is a great way to start the day! Barbara/BRatK

JoyDad said...

I just had to leave a comment, since the word verification this time is...


Didn't the Rolling Stones have a hit back in their disco period with a tune called "Hotsup?"

Trish said...

How wonderful! So glad you ALL had a good time at this retreat. I have my own memories of a miserable time at a similar event.

JoyMama said...

Barbara re the YouTube - Yeah, posting a link would be easier. I'm still trying to maintain some level of privacy about images of my kiddos, though.

Never fear, your link will come via e-mail (velizoon, I hope)!