Chapter 26 of the BOH manuscript: “Traffic Lights”
Life offers traffic lights every day. Ever notice that? We’re starting something, finishing it, or cruising on through. Or, we’re waiting. That’s the tough part. Imagine someone pausing for the light of her circumstances to change. That’s me, driving this Bus of Hope. Developing this level of patience is necessary and beneficial. In the beginning, I felt like I was idling at the stoplight, drumming the steering wheel, watching for Rachel’s recovery.
Speaking of waiting, I wished my father saw me cross that finish line on October 7 in St. Paul. He would have loved hearing the tiny brass band play Sousa to an exuberant, yet small crowd of 150 people, cheering the runners at the finish line. I can imagine him, fist pumping, cackling, and singing as I completed my first race.
The next best thing was embracing my husband tightly, feeling his hearty laughter ring through my small(er) body. His hug told me that he was proud of my accomplishment, and that’s exactly how my father would have responded were he here.
“I wasn’t expecting you for another ten minutes! Did you run all the way?” Jim smiled widely as he spoke.
“Yes! Yes I did!” I replied, half out of breath.
As Jim went to get me something to eat, I bent down to kiss my daughter, who was bundled up in warm clothes and blankets. It was a chilly day with the threat of rain, but mercifully it held off.
She offered a wide smile, signaling her joy and pride in me. My mother stood behind her, clutching the wheelchair’s handlebar. Finishing the Library Love Run inspired a whole new love of races and running for me.
When I trained for that event on the treadmill downstairs in our house, I spotted the soccer ball I bought for Rachel just before we entered Children’s Hospital. Or sometimes I opened the closet and saw the mother/daughter baseball gloves, purchased for little league of last year. Before she got sick, we would spend hours outside playing catch, fielding, and swinging the bat at a set of red, white, and blue whiffle balls.
Those moments brought me to my childhood, playing with my father until the shadows grew taller than us. I ached for the day we might do that again as mother and daughter. And I’m certain that Leah, the OT person swallowed hard when I told her to write down as a goal, “Play catch and swing a bat again.” I’ll never stop dreaming for that to come true.
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My school year started two months prior. I felt a desire to be clear, present, firm, and to be a cheerleader for my students. I wanted to have a good, solid year. I hoped teaching could get easier as Rachel’s recovery advanced.
As for Rachel, she started school on September 8, and she was raring to go. Luckily, we cruised along with the para from last year, a charming, Earth mother by the name of Steph. This really helped the Bus Drivers – my mother, my husband, and me – get sleep and worry less about Rach. Because Steph knew Rachel so well, she could anticipate her needs. She loved my child as if she were her own.
In mid October, Rachel’s teacher drew her name for “Star of the Week.” Sometimes children fuss, cry, or complain when their names aren’t drawn, and Ms. Rasicot (rhymes with mascot) simply reminds the kids that their turn will come soon. But this time around, when Rachel’s name was drawn, her classmates aged 5-6, cheered for her and gave her a standing ovation.
Kindergarten was scheduled in the afternoon, and therapies were often in the mornings. I continued to offer paper and crayons or markers at home to foster any kind of coloring. Around this time, she started making some nice marks on the page with a marker. They were straight up and down lines held with a tight fist in her left hand. Leah, her main OT gal, said that the way developmental therapies go, patients should start with the up and down strokes with great repetition. Later, we would try some left-right strokes.
One night, she made what I would call some squiggly but obvious attempts at making a circle. She drew two of them, in fact. The attempt at any marks on the page was a goal just a few short months ago, but after those squiggly circles surfaced, I wanted to keep setting that bar higher. That’s just how I coach and roll. She finished a goal, now we start another one.
Sometimes, in the morning, I discovered Rachel with both arms, stretched above her head in a very natural way. It reminded me of Dad, as he loved to use his whole body to stretch and breathe deeply.
She started using a fork to feed herself with her left hand. After she mastered that, we encouraged her to put that fork down on the plate after putting food in her mouth. And she stabbed at spaghetti, trying hard to eat it off the fork. Baby steps of course. The attempt, the trying, is the great leap to more, I believed.
One night, Jim and I were out on a date, and my stepson, Dylan and his girlfriend Ali watched Rachel. When we got back, Dylan reported that Rachel handed him her fork for another piece of pizza and said, “Here.”
Carrie, the speech therapist, remained a devout believer that the tablet was not only a way to communicate but also getting Rachel to talk again. Often, Carrie sent homework for Jim and me to do, and it involved setting up words and pages that are specific to Rachel’s environment. For example, if you ask Rachel what she did on Monday nights, she was able to answer – with the help of the device – “Watch The Voice on Mondays.” We also made a church page for her. She could report that she eats doughnuts with her daddy at church with her tablet.
Once, after church, Jim and I were having a conversation around getting ready to do our weekly shopping. Rachel was following each syllable. I mean she had to be, because when we stopped talking, Rachel abruptly pointed at Jim’s shoes, sitting on the floor, not on his feet. We all broke into laughter as Jim thanked Rachel for help with the next step: Put your shoes on Dad so we can go shopping. Later that same week, I asked Jim to go to Dairy Queen. Rachel was happy about that request, and when Daddy was taking too long to get going, she pointed at his jacket as if to say, “Put your jacket on and go to DQ. Now.”
When my mom sent home a gift for us in honor of our anniversary, Rachel had navigated the device to find a bunch of verbs. One of them has the word “open” and a picture of a present in someone’s hand. She pushed that button and looked at the present that Grandma had sent home. Her asking us to open that present was the real Rach emerging. She always loved watching others open gifts, and that beautiful sentiment survived the strokes.
My mother thought she heard Rachel say something very close to “elephant.” When I used our plastic yellow cup to rinse her hair, she almost could say “yellow.”
The more we offered the tablet to communicate, the more our own fears and doubts about language and comprehension were yielding. If I left her alone for a few minutes, she would find the button for “gross” and hits it about ten times. Or the burp button.
While Rachel’s vocalizations accelerated, so did her frustrations in her inability to clearly communicate. Jim called it jargoning, and I found this definition online: “a state in child language acquisition characterized by strings of babbled sounds paired with gestures.” He’s right. She continued to point, to grunt, and to make connections. As much as I hated to listen to the whining and kvetching, I had to remind myself that she was just as frustrated.
One of my favorite examples of her progress includes a Richard Scarry book that deals with counting 1-10. The words are on the right hand side of the page, and the numbers are on the left. With relative accuracy, she was able to differentiate between the words and numbers. Simple is a good place to start.
Early that September, Rachel and I attended a birthday party for a classmate of hers named Kira. Lead by the school cook Paula, with her dyed ruby red hair, the six girls and I cut out, decorated, and baked cookies. Rachel was thrilled to be there, and I engaged her by helping her hold the rolling pin, frost, and sprinkle cookies. Some of the girls knew her from last year. When Rachel responded with a “Yeah,” a few asked if she was talking now. “She’s starting to!” I said, kissing my daughter’s head.
In September, Jim took Rachel in for a 6-month checkup with Dr. Williams, her neurologist. She was mighty pleased with her progress in walking as she viewed the Lokomat video Jim shot with his Ipad. She was “taken” (that’s Jim’s word) with her ability to sit up.
They also discussed Rachel’s most recent MRI, a sobering picture of permanent damage to Rachel’s brain. There’s no getting around that. The left side is the hardest hit, and that’s where Broca’s area, the grand central station for language, exists. Yet Dr. Williams was clear in her assessment. She believed that we had to look at Rachel’s current progress, MRI notwithstanding. Since Rachel is not a classic stroke victim, we were cruising in uncharted territory.
Because we couldn’t compare Rachel to the standard statistics of stroke victims, the neurologist believed that my daughter would decide how many gains she made. Furthermore, she noted and agreed with Jim that her E.Coli/HUS status along with her youth puts her in a better category for a fuller recovery.
Around that time, I finished a book called The Brain That Repairs Itself, and in it, the authors cite the example of a 65 year-old stroke victim, a poet turned professor, who went from crawling to walking, from speechless to speaking and writing poems again, even returning to teaching too until the age of 70. After he died of a heart attack, an autopsy revealed the scarred damage done from the stroke; it was clear that his brain had, as the book said, “totally reorganized itself.” So, it was in my best interest as her mother to continue to believe in that neuroplasticity of the brain, and to do so with the blazing grit of my soul.
Sometimes people ask, “Oh, how do you do it? How do you cope?” I will look them in the eye and tell them how, when the days are hard or burdensome, what keeps me going is an image of my earthly father next to my heavenly father, looking down on me, on Jim, and on Kathy. As I reach heaven, all I want to hear both of them say is, “Oh that work you did for Rachel? Good job. Well done, faithful servant. Atta girl.”
But as I leave this Earth, sailing through life’s last green light, I want to look up at Rachel Reid, a healthy, walking, talking woman. I hope to look into her beautiful eyes, and I hope to hear her say, as she stands over me, “Mom, I’m walking. I’m talking. Great job. Thanks for getting me there. It’s ok to let go.” Hearing that would be worth every traffic light I’ve endured.