Dear passengers,
I’m watching the Timberwolves on the telly, tucked under a blanket with the furnace on full throttle. Today, Rachel, Jim, and I had the opportunity to see the family movie, Coco, a Disney Pixar film about a Spanish young boy’s mission to solve a family riddle and live out his dream to be a musician.
It is a marvelous film, and I openly laughed and wept. Both Jim and I were a little worried for Rachel, wondering how scary it might be, given its references to Dia de los Muertos, “Day of the Dead.” Yes, even though Rachel’s right arm shot up from being startled by something, she did fine, overall. I reached over to sooth her arm down, repeating, “It’s okay. Relax your arm, Rachel.” After a few moments, her arm relaxed and rested on the arm of the chair. Toward the end of the movie, I felt her wriggling away from me. She used her left hand to flick my grip off.
Well that’s interesting, isn’t it? Does this mean she doesn’t want me to console her as often? Does that mean she’s becoming braver in some ways?
This reminds me of a moment last fall. One of her new friends at school, India, invited a gaggle of her friends and family to a llama farm out here in the western burbs.
A llama farm? Rachel is going to FREAK OUT!
Generally speaking, she gets nervous around animals larger than a cat, so I had to brace myself for a meltdown.
It was a bright, beautiful, warm fall Saturday afternoon. To get to the party on the farm property, I had to drive on a narrow road flanked by llamas right next to me as I drove by them, slowly. Rachel completely freaked out in the car. I found a spot to park near the farmer’s home, as this was his makeshift handicapped accessibility parking.
I got out of the car and sternly told Rachel that we were here to stay. I told her that she had to be “brave, in fact, you have to be llama brave.” We got out of the car, found a shady spot about 20 feet away from the animals. So long as we kept our distance, she made it through the party. We all have to learn bravery, and we adopt a brave face to overcome our fears, by being “llama brave.”
Recently, that courage disappeared in the first act of The Nutcracker, put on by the Bloomington Civic Theatre. We were attending a Sunday matinee, as a birthday gift to my kid and a Hanukkah gift to my niece, Shoshana Lou. Rachel had a complete meltdown, crying quite loudly. It may have been the loud music, or the ominous feel of the story at the start. I had to remove her from our center spots in the auditorium. I crept inside a little cubbyhole, meant for stagehands. I crouched down on the floor, consoling my weeping child, while my mother followed us to our new spot.
I was able to see the stage from the floor, while Rachel was tucked away inside this little cubby. Grandma found a chair near her, calmly narrating the moves on stage. Every once in a while, I’d pull on her stroller, slowly and for a small distance, so that she could see a little more of the show. If she got nervous, I pushed her back into the cubby. Back and forth we went during the first act. Each time, I’d pull her out more, and each time, I’d hide her less. By the end of the first act, she was all smiles and couldn’t wait for the second act.
Grandma Kathy treated us to Perkins afterwards. Over our chicken dinner specials, she theorized that Rachel thought we were going to see the ballet on a screen rather than live and in person. The lesson here is this: For Rachel to be ready for a new experience, we have to explain, present the details, and repeat. Otherwise, it’s harder for her to be llama brave™.
While all of this was happening, I was watching little girls prancing about in their beautiful dresses, trying to twirl like the stars and sugar plums on the stage. For me, this is a wonder and a tough place: I am able to honor the beauty of their innocent joy, but I cannot help to feel sadness that my own girl’s footsteps are not her own fanciful delight. She wasn’t the only one crying that night.
But there’s better, more interesting news to report! Brace yourself!
First, Rachel’s fifth grade experience is filled with lots of hard work. It starts with the early rise time, as I reported in the last update. Up by five, meds by six, watching Doc McStuffins by 6:15, and on a bus by 7. Believe it or not, we’ve mastered this schedule.
When she lands at school, one of the hard spots is math, where she works on the subject while in her stander for 45 minutes. The goal is less about math and more about having a positive attitude while in that stander, weight-bearing.
She is mainstreamed for science, technology, and choir. She sits with Evelyn, a new friend to the Bus of Hope. Ev dotes on her and loves her with everything she’s got. In language arts, her teacher, Ali Lalonde challenges her small group of pupils, pouring love and literacy into these vessels, billowing their sails with new words, phrases, and now sentences.
I am a witness: Rachel is reading full sentences. And to support this, I bought a magnetic sentence builder as a Christmas gift for her. I hope to use this tool before she goes back to school on the 4th of January.
Most mornings, as the bus lifts her and her wheelchair into the vehicle itself, I review the day’s rewards if she works hard. Sometimes it’s a couple rounds of Uno, painting fingernails, or often it’s sailing through Caribou for a smoothie or hot cocoa, or maybe it’s M&Ms or Culvers for rock star days.
She has a para on the bus with her, and Lynne is her name. Marty is the bus driver, and she gave Rachel homemade mittens and strawberry jam. Lynne gave Rachel ballet slippers that are small, like ornaments, a Degas painting postcard with dancers, and a note: “Merry Christmas to my party girl.” Those rides to school must be something special for Rachel with women like Marty at the steering wheel and Lynne striking up a conversation. I must brace myself to the fact that some of her fond memories will include other people besides me.
Now most days, Rachel is a hardworking student, and generally does a great job. Sometimes she’ll have a slow start, and by the day’s end, she’ll “finish strong,” as Ali, her special ed teacher says. But one morning back in October, Rachel complained of a tummy ache, and suddenly she was weeping.
My phone rings, and it’s Ali. She reports of the tummy ache, and big tears, strolling down her cheeks. As I’m hearing this, I’m facing a long day of teaching, and I really don’t want to go home. (I actually love my job!) I tell Ali to wait for a while, and if the situation doesn’t improve in an hour or so, I’ll go get her.
I go to teach my first class, and while the students work in groups, I check my phone for reports from Daily Connect. Suddenly, I’m reading how Rachel has eaten a snack and attempted a potty break.
Hmmm…is this the same kid crying, complaining of a tummy ache? I better text Ali to find out more…
Here is the text I received on Rachel’s status: “She isn’t talking about being sick anymore. She told the para she wasn’t sick, she just felt lazy. Not sure what prompted that. She was smiling when I got back from my meeting.”
Am I to believe that Rachel is now recovered to the point where she can try manipulating her environment by “fake, crocodile” tears with complaints of a tummy ache just to get out of hard work because she felt….LAZY!?!? Why do I think this is just the beginning of more manipulation?
Look, BOH, this is both frustrating and wonderful, all at once. In the end, I’m grateful, but I better plan on being a few more steps ahead of her. Or she will win every time.
If that’s not enough, a week later, she started complaining of a “toothache,” as she clasped her left hand over her right, lower jaw. Her solution to the toothache? Braces. She said the word “braces” and then placed her left hand back over her jaw. She was so convincing, I made an appointment with her dentist, just to make sure.
We arrive, I place her onto the chair, and our Dr. Gaythri looks into her mouth to see where this pain is coming from. I hold my breath. The doctor looks in, flashes me a “don’t worry” smile, and then directs her words to Rachel: “Okay, listen to me Rrrrachel, (she speaks in a rolling R, which fits her Indian accent,) you do not have any cavities, nor do you need brrraces.”
When my daughter hears this news, she utters a disappointed, “Awww?”
And then it all made sense to me…I confessed to the doctor that Rachel had been watching a video of a little girl going to get braces. Purple and pink ones to boot. That prompted this impromptu visit…my Rachel can improvise her world into believing that she has a toothache that’s solvable with braces.
Have I mentioned she turned 11 this December 6? She did. Did I mention she was a cat for Halloween? She was. Did I mention she opted out of trick-or-treating and didn’t regret that decision for a nano-second? She didn’t.
She received a clean bill of health from her hip doc, along with x-rays that suggest that her spine is straighter in just one year. Those pictures of her spine, old and new, side-by-side, made me tingle with joy.
I’ve also gotten the blessing of the principal at Grandview Middle School to use the hallways for walking starting in January. I’m grateful for this. Look for new videos of walking in 2018!
And she has returned to Girl Scouts too, so if you’re hungry for Thin Mints, I know a girl….
And that girl, like the book title suggests, why, “She Persisted.” So do her parents, and grandmother too. This means we brace ourselves for the long haul, and we believe in the layers that dissipate with every full sentence uttered, clearing the way for the healthy Rachel to emerge from those damn strokes.
Well, my beautiful Bus of Hope, I am certain I’ve bored you to tears. Because, clearly, nothing much is going on…right?
Merry Christmas, Happy New Year, Happy Hanukkah, and happy anything you celebrate. May you be fueled by love, joy, hope, and humor.
Love, Melissa, … on behalf of Jim, Grandma Kathy, and Rachel Reid, a future Oscar ® winner.