The BOH Marching Band
Dear BOH riders,
One afternoon, as BOH Day Camp was winding down, Evelyn made a big announcement: “Melissa, I’m gonna take over potty training!” I smiled at her total commitment to give it her all. My suspicion was all too strong: Ev isn’t strong enough to lift Rachel, a girl at nearly 100 pounds. But I wasn’t going to mention it. I wanted her to find out for herself.
The next morning, she came to Day Camp with total confidence in giving it all she had. After breakfast, we wheeled Rachel into her bedroom, where I had set up the potty training station: a fresh bath towel on a made bed, along with a rectangular liner to protect the bedding. A diaper sat to Rachel’s left side, and the commode was pulled in close to where Rachel’s feet rest.
“OK Rachel, let’s get you on this bed from your wheelchair. Sound good?”
“Yeah!” she said with a giggle.
“OK, here we go.” Evelyn’s arms wrapped around Rachel, whose laughter made it more difficult than usual to transfer her. Did Rachel know that Ev probably couldn’t do it? Was it Ev’s trying it at all make her laugh so? Quite the mystery.
After two or three full-throated groans and attempts, I offered to step in. I complimented Ev for her big college try. After I got Rachel onto the bed, Ev wanted to try getting her from the bed to the commode. I honored her request, letting her have another go. Once again, it was the same result, as I stepped in to plop Rachel onto the commode.
As we waited for Rachel to complete her task, Evelyn shared her thoughts to her own question, “What did I learn from this experience?” While I can’t remember every answer, I’m fascinated by her desire to seek the answers to inquiries by her own curiosity. Love this kid!
The BOH Day Camp has settled into a nice groove. We know what meal plans work: pizza, Spaghettios, and Easy Mac for lunch and waffles for breakfast. We know that if we take a walk from our house to the BP gas station, candy should be the rich reward. We know the routines of getting into the van and out of it, and Ev and I have roles to execute this. We know that Cities 97, our local radio station, is the favored spot on the dial; in fact, Evelyn knows most of the words of these songs, and Rachel peers at Evelyn singing, trying to learn the words for her own knowledge. And anywhere we go, we know we gotta have snacks, such as carrot sticks, snap peas, and White Cheddar Cheezits as the favored delights. With this knowledge, we have made this summer zip along with a surprising speed.
As I travel around my town, I spot a few leaves turning yellow, a sign of Things to Come. You know, the routine of school, fresh corn on your plate, the State Fair, and cooler temperatures. For me, this time of year puts me in a reflective mood: I evaluate all the destinations reached on the BOH and in my life in general, and I wonder what’s yet to come.
Since I’ve written last, Rachel has continued working hard in her therapy sessions at Gillette. One highlight is pool therapy: last Thursday, Rachel completed her final session of three; this time, she worked hard on kicking, sit to stands, and side-stepping.
These appointments were spread out a month apart, and the improvements in such a short time was impressive. In that last session, I felt as though Rachel understood what was expected of her and thus was able to perform better. The pool helps her with movement and eases weight-bearing. Looking forward, I hope to use the indoor pool at Grandma’s during the school year to continue the progress.
At another recent PT session with Katie, Rachel was walking while using her own gait trainer. To inspire her steps, Evelyn followed the therapist into one of the large closets that store toys, games, and other equipment. Ev spotted a box full of musical instruments. Her genius idea: play music as she walked alongside Rachel, who had to walk in order to “hear the band” play. It worked! Click here to see it for yourself.
Another highlight is a biggie: Rachel has been approved for her own power wheelchair. Between HealthPartners and MA, the chair is paid for. This coming Tuesday, we will head to Gillette for a seating appointment, whereby Eric, an in-house technician, will transform her new wheelchair to fit Rachel’s body. For example, the controls to move the chair will have to be on her left. Stuff like that.
Rachel will use the power wheelchair every day, to and from school. This is exciting and slightly scary, but the therapists tell me (over and over again) that this new chapter in Rachel’s life will usher in a new sense of independence. I’ll put the brakes on my fear to see that emerge. Any day.
Her language skills surpass the speed limit for any stroke survivor. The big push was for her to work on “WH” questions. If I am in the middle of a texting conversation, she will nosily ask, “Who texting you?” If we are out and about, and I pause to peer at my watch, she asks, “What time is it?” If Rachel observes a scene that doesn’t make sense to her right away, she hits me with, “What is going on here?” Eventually, I hope she will stop or decrease the request to know what’s for dinner starting at 6 a.m., but we’re not there yet. Sigh… “Rachel, can I finish taking my shower first before working on the dinner menu? Please?”
My mom continues to recover (rather) quickly from her double knee surgery. I got to see her for Rachel’s last pool therapy session on Thursday, and she walked with concentrated confidence. She shared with me that she notices her own improvements, noting how it takes longer for pain or discomfort to hit. Last night, she joined a large group of Rachel’s friends and their mothers to see Christopher Robin. She used a cane for support, but it didn’t look like an extreme necessity.
In other news, I finished a four-week course called Summer Scholars Academy. I face a week left to prepare for fall semester. I met some terrific students, and I read some good, solid writing. I mentored them on writing techniques, and I fostered as many habits that ensure greater success in life. One particular student, Rosa, came with a fierce heart to learn, to laugh, and to write. While she struggled at times with starting an essay, she showed grit and determination. Which I love. I often spoke Spanish to her, saying, “Te amo!” To which she replied, “Me gusto!” I hope I see Rosa in the hallways this fall.
Jim has completed the bathroom remodel, save a few tweaks. I love it, and I am very proud of him. He has also assembled a woodshop for himself in the last few months. I hope that he can carve out time, practice, and confidence to create items for us and other people. Working as a senior assembler at Stratasys can be taxing; his own woodworking *could be a source of joy. Right?
I have a week to complete and set up shop for fall semester. I am ready to do this work. I start my 19th year of teaching, and I have no desire to stop. In fact, I started my career on Dom Castino’s birthday, August 20, 1999. That night, I had a moment of celebration with my parents. That night, propped up by a pillow, Dad spoke of how proud he was of me, finding my way after a lot of wrong turns. Mom told me his voice broke slightly as he spoke of me with such wonder and pride. Much of my teaching muscle contains my father’s can-do spirit, comedic timing, and copious joy and curiosity. Thanks, Dad.
Recently, Ev stayed with us longer than usual on a Friday so her mom and significant other could enjoy a night out. Her curiosity centered on Rachel’s nighttime routine.
“I’m really interested in watching how Rachel’s bedtime goes. Rachel, can I watch you get ready for bed? Is that cool?” she asked, giving her a thumbs up.
“Yep,” Rachel said.
And so, after watching the Lego Movie and inhaling a mountain of homemade popcorn, I transferred Rachel to the wheelchair, and I invited Ev to follow me to witness the process:
1. Before we bring her in, we turn down the bed and assemble pajamas and a fresh diaper. We also will put down another rectangular pad to protect the sheets from any accidental excrement.
2. We wheel in Rachel. Sometimes, I will start the teeth brushing process while still in the chair so that she can help do it, along with rinse and spit into a bowl.
3. After teeth brushing, we transfer her into bed. The potty training process mentioned at the beginning commences. En route to commode, we remove her shoes and AFOs. (She has had increased success on the potty, but her next step HAS to be telling us she has to go, and soon enough to allow us to get her there.)
4. After potty training, it is time for pajamas. We still do most of the work of getting them on and off.
5. Lately, we have also put on a knee immobilizer to give her legs a prolonged stretch. This involves a set of six Velcro straps to navigate, pulling them just so, offering a snug hug and space for blood flow.
6. The next step is something we’re working on in therapy: bed mobility. She cannot move herself into a position that sets the stage for sleep. So, with the strength that I have, I use my arms, core, and knees to heave her, bit by bit, into a sleeping position.
The better she gets at bridges, the easier this step will be. (Another thing that will help is a bigger bed. We plan to do this in the fall.)
7. Once she is in a position that’s close to where she will sleep, it’s time to read a book. On this night, Evelyn gladly offered to read to Rachel.
8. After reading, we do a final positioning, whereby we bend, tip, and roll Rachel into comfortable spot to sleep.
Did I mention Jim and I take turns putting Rachel to bed? I hope most parents do this.
As I drove home from dropping Evelyn off that night, I wondered what affect this summer spent with Rachel is having on her. Does she realize how lucky she is to be independent, mobile, and agile? Does she realize the joy she brings to Rachel? Does she realize the help she is to me, as she uses her intuition often to help me get from point A to point B?
When she graduates from Mound Westonka High School, with her sights on a job that enables her to help others, I’ll be right there, reminding her of the summer of 2018.
On that note, this Bus rests. I bid you love, hope, wonder, curiosity, Cheezits, ice cream, and great music that make your heart glad.
Roger that,
Melissa