Tags
Hello,
I know what you’re thinking…you’re right. It’s about time. It’s about time I
write an update. I’m sorry. The pandemic has silenced me, and now that
fall semester starts soon, it’s time to connect.
It’s not an exaggeration to say that Rachel and I have been nearly hip-to-
hip since COVID 19 usurped the daily routine in March of 2020. When we started distanced learning, I stood back to see if Rachel could do
it by herself. I would be sorely mistaken, and it turned out to be a one-day
experiment.
As a special needs mom, I know that I’m not alone: many parents,
(read more mothers than most,) sit rightnexttothekid.
If we don’t, distractions lead attention spans astray, missing the chapter
novel, math lesson, or history review.
“She can follow a novel,” said Ali LaLonde, her middle school special ed
teacher last fall during conferences. I truly didn’t believe that. But I watched
it happened day after day, thanks to the coronavirus. Would I like her to be more independent? You betcha. But I was able to watch Rachel master new words, increase her math aptitude, and answer questions about the reading. It was a bright light I needed to keep moving.
Another perk to our quarantine was getting to know and watch these terrific paraprofessionals who assisted Rachel with math and history. The morning math para, Lizzie, assisted Rachel, and Miss Bella (another student). Most days, they made a great team. They worked tirelessly on counting, shapes, and patterns. Later in the afternoon, Keith, a warm-hearted family man, joined us in a Zoom room and offered a short history lesson, followed by questions, notetaking, and for fun, show and tell.
Sure, like many of you, shifting to a new pattern took time. Plus, the BOH had a shared “bubble” family with Evelyn. The new pattern took patience, and I found myself taking an abundance of naps. I had to sacrifice my own work, doing it when my family slept, late at night.
March slid right into April, and May blossomed even as the pandemic spread, casting long shadows. I can’t speak for everyone, but when life feels anything but normal, I looked for pleasures of many forms. For me, watching birds eat from my feeders provided a necessary dose of peace. From April on to now, I have seen a bounty of chickadees, cardinals, and house finches. I swear they also look out for one another by eating one or two seeds, and then, with a swift flick of the beak, cast out seeds for others. I also have a hummingbird feeder too, and Rachel will report the hummingbird sighting if I’m not looking. If you don’t have bird feeders, I recommend you get a few.
In early June, Rachel completed 7th grade. Like many families, we participated in a drive-thru graduation ceremony. Rachel wept as her teachers waved and wished her well. Trust me, tears fell for me too. By the following Monday, our next episode of care began: Rachel headed back to the Lokomat for three times a week, and she participated in OT and Speech in virtual meetings.
The Lokomat was a solid success. She was brave, hard-working, and maintained a positive attitude. We also had one therapist, Kellen, for most of the sessions. I think that kind of continuity really helps a pediatric patient thrive. Of course, Kellen is a male therapist, and on more than one occasion, I do believe Rachel developed a small(?) crush on Kellen, and as such, worked a little harder…He, in turn, used a gentle voice with her, learning when to push harder and pull back. He also learned the name of her favorite……
OK, I need to get something off my chest: Rachel has discovered BOY BANDS!!!! I’m not kidding. She loves music, and that we already knew, right? But now her tastes have become particular and strong. First, it was the Jonas Brothers Band. And many of my colleagues, family, and students tell me that Rachel has good taste!
Her love of BOY BANDS didn’t end there. It shifted. As the love of all things Jonas waned, she pivoted to the music of Zombies 2, and within a week, she had that soundtrack memorized. (For those uninitiated, Zombies 2 is Disney’s version of zombies, but the cast can dance and is cute as a button, even if the main hottie zombie has green hair. Forgive my digression!)
Somewhere along the line, Rachel’s taste shifted from zombies to a “new” BOY BAND called Why Don’t We. Yeah, I know, for some reading this, it reminds you of the old standup bit, “Who’s on first, What’s on Second, and I Don’t Know who’s on Third!”
Truth be told, Why Don’t We is a legitimate BOY BAND with more than enough talent. They are (cough cough) really young! Like between the ages of 19-22! And they have one album out and several single releases. Whatever the song is, Rachel knows the words. She uses her iPad to punch up YouTube videos of the music she loves. Her parents possess drastic earworm; we often wake up to her BOY BAND songs, ringing in our heads. It’s a good thing we love her, isn’t it?
How do we meet the challenge of a special needs child during a pandemic? We let Rachel have her iPad for a bit in the morning and again at night. This nifty device only holds a charge for so long, so once we take it away for the day, it is an Olympic effort to make the leap to the evening, when it is fully charged. Sans screen, she keeps me company while I do housework; she is at work in her therapy appointments; she is working on puzzles or playing UNO with me, or she’s enjoying Evelyn’s company during the weekdays.
In other words, we do the best we can, just like the rest of the world.
Let me pause, once again, to share another pop culture phenomenon that has occupied our family’s quarantining time, especially this week, and that’s a Netflix hit called The Umbrella Academy. Tonight, we finished the second season. Rachel loved the show and developed a crush on “Number Five.” This particular character’s age is 55+, but his body gets stuck inside a 16-year-old boy. The “kid” is a good actor, and he has won Rachel’s heart, for the moment.
Watching this program gave us all something to look forward to as a family unit. And it is something to behold to have us all laughing at the same thing, in real time. A true delight and marker of time. Rachel is maturing and deepening in her understanding.
In July, we visited Dr. Walker, Rachel’s ortho surgeon. He took Xrays of her spine, hips, and knees. Everything looked terrific, except for her….spine. Dr. Walker referred us to Dr. Eduardo Beauchamp, a part of the Gillette team of spine surgeons. He told us that yes, Rachel has scoliosis, and yes, we need to fuse her spine. But no, we don’t have to do it right away. And no, we don’t need a body cast. And yes, surgery will put a barrier up for independent walking. He didn’t say impossible, but more difficult.
Is it disappointing to hear of YET, ANOTHER procedure that Rachel needs done? Of course. How do I feel about this? I am numb. I am already preparing for a surgery that would happen at the earliest around Christmas. I know it will be me there, at the hospital, when her spine gets fused. And just for review, she has already had the following procedures: numerous phenol/Botox shots, reconstruction on her belly button, two hip surgeries, two screws put in the knees, and one port put in and then out for the life-saving drug called Soliris.
Enough!
But if we DON’T do it, her body could become deformed, whereby the ribs could affect her lungs and heart. So it’s inevitable: we do the right thing and have Dr. Beauchamp fuse her spine. We spend another week in the hospital. (Really, it’s me doing most of the hospital stay.)
In other news, Jim has had a week off from work, and it’s been great to have him around. Technically, the company is on furlough, but Jim had enough PTO to cover it. The time off has allowed him to get a head-start on a remodeling project in the basement. He finished an accent wall using shiplap and insulation, and then he continued the insulation, 4x4s, and vapor barrier on the front wall. He will pick up the work on the weekends after this. I’m happy with his progress, and I’m grateful for the effort. Quite the sacrifice. His furlough ends as he heads back to work tomorrow, August 17.
I was fortunate to teach two research writing classes this summer. Both were online, but I truly enjoyed the work and the students I met. Rachel loved being with me during ANY Zoom meeting I held, but she especially enjoyed meeting my students. And during one moment, Rachel perfected a prank on me…
While in a fun, lighthearted, but solid discussion about how to execute the block quote, one student, Emmet, and I were duking it out. Another student, Jake, was the judge, and he kept score on the wipe-it board behind him. The battle of precision and protocol waged between teacher and student. Judge Jake held an erasable marker in his hand, on the ready.
As I raised my hand to make my next point, I caught something out of the corner of my eye; with slow-motion-like-the-movies, Rachel had a blue Crayola marker in her hand, and she applied it to my lips, as if it were makeup for a Friday night.
It honestly took me a second to comprehend what just happened. As I came to, I was a mixture of angry and laughing. By now, everyone is laughing, and Jake is marking Rachel’s name onto the wipe-it board with a score of one next to it. Well played, Rachel, well played.
For the rest of the week, Rachel reminded me of this moment, saying, “Pranked you!”
Her language skills and cognition deepen every single day. She uses her wit and humor, as you can see, like a cudgel, slicing through my doubts.
I have four classes this fall, and at this moment, it looks as though they all will run. I begin the work of prepping tomorrow. Rachel starts 8th grade on September 8th, and our school district will be doing hybrid approach. She will attend Tuesdays and Thursdays, do distance learning on Mondays and Wednesdays, and Fridays will be for individual learning. I am okay with this set-up, and I’m fully aware that this could change based on the case count.
So, how are you? Feeling a little trapped? Can’t get out as much as you’d like? I can feel your pain. We here on the Bus have been rooted at home for quite a while. I remain hopeful that we emerge from this pandemic stronger. But hope doesn’t mean easy. It calls for sacrifice: we should wear our mask for our neighbors and ourselves. But we should wear them for Rachel and others like her: “Blessed are the meek, for the meek shall inherit the earth.” Amen?
Melissa in her Twins mask 2020
Be well, stay strong, and wear your masks.
With love from the Bus,
Melissa, on behalf of Handy-dandy Jim, Main Driver Melissa, and the Prankin’ Rachel
By the numbers:
4 – number of inches R grew in one year. (She is 5’1”.
80 percent: the amount of mornings R wakes up dry. She still can’t predict going, though.
6 – the number of times I’ve filled my car up with gas since March of 2020.
2 – number of full novels I watched R consume through 7th grade and summer school. Series of Unfortunate Events and Because of Winn-Dixie.5+ – number of clothing items with boy bands or pop culture items featured on them.