Making the Grade on the BOH
Dear BOH,
Rachel’s school year contains four quarters, and by my reckoning, it was in the beginning of the first when I last wrote. Here we are, in the second quarter, and it’s time for a report card from the BOH. Please take a moment to get comfy, fill your cup, and settle in for a full journey.
One day, during the daily tubby, Rachel placed her washcloth down on her lap, looked up at me, and said, “A-plus!”
“A-plus? A plus for what, Rach?”
“Clean-up time.” By this she means taking a washcloth and independently soaping up her own body. This is one of the many goals she worked on during the summer with OT specialists, Jamie and Wendy.
But on this particular morning, she maybe wiped one knee, a half a shoulder, and a quick dab of an arm pit.
“Uh, no, Rachel. You got a D+/C- effort on cleanup time. Nice try, though!”
I made the observation that she is far more likely to clean her whole body IF I DO NOT TALK during the soap stage. She is much like my students, whereby if my opponent pitches enough topics and questions, I’ll lose focus on steering. Sometimes I have to give the librarian shush to get her to earn a good grade….
The next day…
Rachel: (who now has her soaped up washcloth, in her left hand, ready for use): What is it for dinner?
Melissa: [Librarian shush, LS for short. I continue scrubbing my back.]
Rachel: Evelyn coming today?
Melissa: [I give another LS, as I remove yesterday’s eyeliner so I don’t look like a raccoon…]
Rachel: Pick me up?
Melissa: [I shake my head while giving the LS, and point to her washcloth and stinky toes, as a suggestion.]
Rachel finally finishes her task, hands me her cloth, and gives herself a B+. I agree with her assessment as we finish the soap stage and I hang up her towel. This is a step in the right direction, certainly. And as we all know on the BOH, stroke recovery involves a lot of repetition. And librarian shushing.
But there are moments where I would not want to suppress that voice inside her. It’s too rich with deepening perception and a comic’s sharp zing.
Yesterday, on Thanksgiving, our guests were Grandma Kathy and our dear friend, Susan Magnuson. Chris and Sara stayed home on the account of sickness, so it was an intimate crowd.
Chef Jim came out to the living room to report that dinner would be ready in about an hour or so.
Rachel looked up at Daddy and made a sound that sounded like the question, Really, that long? A brief pause, and Rachel looked up at her father and asked, “Snackipoos?”
You know, snackipoos: Otherwise known as apps in a bar, or treats in a college dorm, or munchies for video gamers. For Rachel, these are snackipoos. Can you imagine how fast she laid out every adult in that room? We all howled in laughter. Best part? She didn’t get alarmed or startled by our response: she proudly joined in on the fun. (So long as Daddy assembled snackipoos, which consisted of cheese and crackers.)
Her awareness and recall just keep getting better, and all three of her speech therapists would be thrilled by this next example: Later that Thanksgiving evening, after Daddy Jim retired for the night, we stayed up and watched a Disney/Mickey Mouse holiday special.
She spots her favorite and yells, “Minnie!” She makes this lovely O with her mouth as she smiles, curving up her eyebrows as she points with her left hand.
“Really, you saw Minnie?”
“Left corner.”
I’m telling you now: I don’t think I’ve heard her use these particular words to indicate such clear, specific location details…and so quickly too. I should probably mark an A-plus for this?
Here’s another example: As we prepared to host a Thanksgiving meal, we had to do some shopping. Sometimes, Daddy Jim will go solo, and most other times, we go as a family. So Jim and I are strategizing, and I turn to Rachel and ask, “Hey, Rachel, do you want to go shopping with us?”
In a split second, Rachel responded, “Sure!”
Yes, justlikethat – she responded as anyone who loves shopping would.
Her recall prowess continues this holiday season, in fact. Can you guess how? Christmas songs. Now for those of you who don’t live in the Twin Cities, we have a radio station called Kool 108. This is the go-to station for holiday tunes, and this year, we were graced with the Xmas hits BEFORE Thanksgiving.
Recently, on our way home from St. Paul, in the fading afternoon light, I caught Rachel mouthing out the lyrics to most of the songs. In particular, I was impressed with her cadence and recall of the song, “Let It Snow.” Her eyes peer out the window, “eyes all aglow” as she sings along, as if she’s looking out for Santa, or perhaps she is singing to my father, who’s probably running a singing gig in heaven, tuxedo in tow.
We met with Dr. Gormley, her rehab doc, that afternoon. His smile was ten miles wide as he listened to me tick off the successes Rachel has had. I had to share with him that a trip to the Minnesota Zoo in 2018 resulted in a gallon of frightened tears, a meltdown, and an early return to school.
This year, she made it through with only a few tears and a supportive, yet firm para who redirected the emotions to positive territory. Rachel made it to lunch, with full smiles and excitement to see more animals that afternoon.
The week prior to the trip, teachers and paras kept talking up the zoo field trip to Rachel, expressing their belief that she would love the zoo and do just great. But as a mother, I had my stubborn doubts. So that morning, I started to pack books, a deck of Uno cards, and her Ipad…just in case. She observed me doing this: “No Uno. No Ipad. No books.”
“But I’m just packing it in case….”
“No Ipad. No.”
“So let me get this straight: you DON’T want me to pack this along? You DON’T want Uno or your Ipad.”
“No. No Ipad.”
She said no to the back-up plan at the zoo. And then she proceeds to enjoy it like most kids do. Did she take control, then? Or did we just get lucky? Was she somehow planning her own good outcome? I wish I knew the full answer, but the way she smiles (still) at her plushy toy panda from the zoo gift shop indicates all I need for now.
“Dr. Gormley, is there anything else we can be doing? Do you have something new for us to consider? Anything at all?”
“No! No just keep doing what you’re doing! You’re doing a great job.”
“Oh you say that to every parent….”
[I’ve said this before to Gormley, but this time…]
“No, I don’t!” he said. Something in the way he said it suggested I am not believing him. And I do, but…
“She is doing things she shouldn’t be able to,” the good doctor repeated.
Maybe I’ll just start believing it from now on?
In other news, the BOH reached another milestone: we now have a chair lift (installed by Beyond Barriers)] that takes Rachel from the first level down to the basement. We now have a bus turnaround in our yard, which enables the bus to pull in, collect Rachel, back in, and drive out onto the street, nose first. This might sound like no big deal, but anyone who lives near us, or to those who have been to our house, and some who have been with us a long time on the BOH…they all know that the second driveway we added in 2011 is a very steep hill that I have been pushing Rachel UPWARD to get onto the special needs bus. (I never had a single accident either in the all the years of pushing her up the hill.)
And some folks know that I tried to convince Jim to sell our current house and go buy a different one. I tried more than once. It was like moving a cement block with a string tied to my pinky finger. Impossible. His response was always that he didn’t want to start a mortgage at the age of 60. Instead, here we are: and as of Tuesday, we know this new system works. And that’s good. Because Rachel weighs 123 pounds.
The last piece of this chair lift/bus turnaround is R’s new wheelchair. Technically, we need two: one for the upper level, and one for the lower. For now, we have a second one on loan, but within the next week or so, we should have Rachel’s new one. Marching orders on getting this last step finished! Many thanks to a company called NuMotion for your assistance in helping us pick out the new set of wheels.
I can’t wait for it to be here as a part of Rachel’s life.
Life is busy for me too. I have one more month of teaching left in Fall Semester. I have been subbing for a colleague at Normandale as she takes a medical leave. Students have begun registering for classes in the spring, and I hope this trend continues. Marching orders here too, securing enough work for health benefits.
I’m grateful for my work, even on the days it gets challenging.
As I came home from work the other day, I noticed that my Odyssey turned over 199,000 miles. We bought this car in September of 2011. Soon, it will reach its own numerical peak of 200,000. We will likely hold onto this van for as long as possible. It has served us well, and it proves to be a reliable source of transportation. This is a good thing, as “so much is riding on these tires!” After all, this van is the epitome of the Bus, garnering an A-plus for reliability, endurance, and strength.
Where will the Bus of Hope go in 2020? May it bring us to faces, places, and spaces that inspire hope, growth, and joy. Marching orders!
With gallons of love,
Melissa