Chapter 29 of the BOH manuscript: “13.1 Marks the Spot”
As a Bus of Hope driver, my diabetes presented a potential flat tire, possibly sidelining me from reaching new destinations with Rachel in her recovery. Just like my daughter, I had to fight. Sure, I had to watch my diet and take my meds. But the biggest weapon I could wield was running.
Since the Library Love Run back in 2012, I entered and completed a handful of running events. I taped the race tags on my bedroom wall as a proud reminder of the accomplishment. All of the races were 3.1 miles, and to my surprise, that distance had now become easy. I craved a longer running distance.
In the summer of 2013, with visions of first grade for Rachel, and my own school year soon to start, I flicked open my computer and looked for another race. I found two: the first one was a simple 5K in September, and it took place around Lake Harriet. But the next one? It was the Monster Dash, a famous race in St. Paul. The organizers encourage costumes since the event took place days before Halloween.
Now I confess, I stink at math. As the money drained from my bank account, I realized – after the fact — that I signed up for a 10 M race, meaning ten miles, not a 10 K race. Since Rachel’s recovery was my motivation, I just had to keep moving. Besides, a tiny, small voice inside said to me, you can do it.
Whenever I’m on a run, I’m problem solving as I pound the pavement. I tweak my lesson plans. I revel in the “me time” that every run provides. As I complete each mile, an image of Rachel running next to me ticks up my pace. Scenes of her recovery flashed into my mind as I reviewed how far she’d come within the year.
OK, Melissa. The first goal is to reach the playground at Rachel’s school, where she worked on the kite? Do you remember that?
I’ll never forget pulling it out of her backpack with wonder and surprise. The art project is black and white when the kid gets it, so the student provides the color. I saw big, grand streaks of red, green, blue, and yellow. Each stroke was up and down and sideways on the kite. Her OT sessions were paying off.
I wished I had watched her do it, but her own para said it best in this email: “As far as the kite project, it was coloring here and there on the cut out kite at the end of the day using maybe 6 or 8 colors. She was doing this on her own and smiling and looking at me like, ‘Look at me go!’ So I was very happy for her to be engaged in this activity. Normally, if something is of interest to her or she seems not wanting to focus, we make a few attempts at completion of part of the seat work and take breaks with high fives for work done.” We have not kept every piece of art from Rachel’s life, post-stroke, but the kite and all her colorful glory remains on our wall.
So all those hours of me with her, fetching crayons and markers off the floor, gave me a kite that she willingly colored on her own with a para’s minimal assistance. Worth it.
OK, you made it to the school grounds. Next goal is your favorite fish mailbox, half a mile away. How many words is she up to now?
Once, she had a two-word day: she said “bone” in reference to an activity the students in her class were working on. Then, Steph and Rach had wheeled into the elevator at school after speech, where Steph asked, “OK, what floor do we go to so we can get back to class?”
“One,” said Rach.
Her ability to navigate that communication device was improving. Once, she had a poopy diaper, and we both knew it. But I put her tablet in front of her, and in seconds, she told me to change her. She also could hold her nose, giving me the P-U sign, as if something smelled bad. She could do it on command or on her own.
For example, when working with her school speech therapist, they were looking at a picture of a skunk: quickly, she gave the stink sign, pinching her nose. If I am folding socks, I will sniff it and say “P U,” and she will respond with that sign. What a sight to see such quick response, fast connection, and her great joy.
What a glorious day to run! Man, I hate all the driving we have to do. Damn, I’m tired already, and I’ve not even completed a half-mile.
And if it wasn’t the trips to St. Paul for therapy on the Lokomat, we were heading to the U for infusions that started at 9 and ended just before noon. On one particular infusion morning, I was trapped in traffic that was stop and go for miles, making us late for the infusion by an hour and a half. A half an inch of snow had fallen, and everyone had forgotten how to drive.
To make matters worse, I broke one of the many rules of a Bus of Hope Driver: do not leave the house with a full bladder of coffee. Don’t. Here’s why: I had to borrow scrubs from the nurses because I didn’t make it to the bathroom in time.
OK, good, moving on! Let’s not dwell on that…Focus now on reaching the water fountain on the main drag. What else is Rachel doing that makes it worthwhile to run?
Sarah, her school speech therapist, relayed to me that they were reading a story that had a mother as one of the characters, and every time Rachel saw her, she said “Momma.”
Cute story, Melissa. There must be more… Move it…
When I put her to bed, we looked at books. At the time, I was finishing my graduate reading certificate. Many of the textbooks discussed the value of reading aloud, and I firmly believed that it played an important – continuing – role in Rachel’s recovery.
Sometimes, she pointed to specific words. If I read Are You My Mother?, she pointed to the word “SNORT” before I read it. When it was time to turn the page, I encouraged her to just reach forward with that right hand and tap the book. Eventually, I hope she can turn the page with Miss Rightie. But just like running, we need to do short distances to achieve the larger goal.
As Rachel worked at walking, we asked her to stand up straighter. We made adjustments on the gait trainer to allow for it. I taped paper to the wall and got her to draw on the paper with a marker in the hopes that she stood up straighter. It worked for a little while.
Another thing she loved was her dollhouse. My maternal grandfather, Don Watson, made it for me. During long stretches of pretend play, we helped the little family move from main level to the first floor, offering names for each mini-person.
Girl, you’re almost done. You have run or grooved your body for two miles. Keep going. Keep thinking about your Fighter.
Rachel inherited a love of technology from her dad, and she readily understood the concept of Siri on my iPhone. One night, she pushed the button and murmured something to Siri. Here’s what the robotic voice picked up from Rachel: “Damn good.”
What about the time she showed prowess in math, unlike you, the English Major?
Since she was participating more in class, the team added a button to Rachel’s device that said “I know it” in response to a question. She mastered it quickly. Whenever she used it, her classmates fell silent, aching to hear what she had to say. One morning, Rachel’s class was working on math problems, and Jodie asked, “Who knows what 4 +1 is?”
Rachel located a button and pushed her answer: “I know it.”
“OK, Rachel. What’s 4 + 1?”
Within 2-3 seconds, and a few clicks of her device, she answered, “Five.”
The class roared with applause.
Jodie also felt that Rachel’s use of the speech device accelerated throughout the year. So much so that she was “blurting.” During a math lesson, Rachel raised her hand to answer the question, “What is the missing partner for 10=3+___.” First she said 2, but then she answered 7. Then the teacher called on someone else for a different partner of 10. Rachel used her device and answered for them. The applause resumed as they said, “Good job, Rachel!!!”
So, Rachel was blurting, “getting” math, and answering someone else’s question.
How about your birthday back in February? Didn’t you get a steak dinner and a game of CandyLand you won’t soon forget? Nice going, by the way, as you’re at 2.5 miles. You’re almost home.
At one point, as Jim cooked the birthday steak dinner, Rachel was communicating that she was hungry for the succulent food. She sat in her wicker Ikea chair, at the living room table, with her mouth wide open and said, “Ahhhhhhhhhh!!!!”
“Rachel, are you hungry?” I asked.
“Ahhhhhhhh!!!” she replied, affirmatively.
Apparently, the steak wasn’t coming fast enough, because then she leveled up her intensity. She started pointing at the table, which is where we eat, and ahhhh-ing. I told her that dinner was coming, but we just have to wait.
Finally, she pointed at the table, then she lifted her index finger and pointed it to her mouth, all the while saying “ahhhhhhh!!!” I was laughing so hard, tears streamed down my face. Once she realized I enjoyed it, she continued.
After Jim cleaned the dishes, Rachel and I played a game of Candy Land. I assisted by holding her forearm while she grasped her game piece and released it to the next square. She was actually dropping it gently and nicely. She was also using her device to tell me (accurately) what color was on her card that she drew. But then she drew the peanut. CandyLanders know that the peanut is a single location on the board.
“Where is the peanut?” She instantly pointed at it. “Can you move your game piece to that spot?” Within three seconds, she plucked her game piece up, moved it precisely above the peanut square, and then lowered it onto that space. I never once touched her arm.
I thought I would have to wait years for that to happen.
What about Rachel’s birthday last December? She had a good moment there too?
When Rachel turned six, I wrote and read a book to her class about Rachel’s illness and recovery; I titled it Rachel Reid’s Bus of Hope. It was moving to read this, and I didn’t make it without tears. One little girl, Kira, perked up after I read it and said, “I like it. I like that story.” After I read the book, her class finger-painted cheerful messages of hope. Pictures of their artwork pop up on my screen saver periodically.
During one race last April, the sun was above and behind me so that I could see my own shadow. I looked down and noticed these really thin legs, and I thought, “Whose legs are those? Oh my goodness, they’re mine!”
In that same race, I felt the classic runner’s high. The sweeping, heart-pumping, soul-singing feeling is better than any drug on earth. I felt invincible.
Yeah, but the cast on her arm tested your fortitude. Did you forget that?
Oh, and keep running. Today you need to prep for ten miles, not three…
As Rachel’s year of kindergarten ended, we started a brand, new approach to her recovery called Constraint Therapy. From the American Heart Association’s website, they define this as, “therapy [that] forces the use of the affected side by restraining the unaffected side…[the] therapist constrains the survivor’s unaffected arm in a sling. The survivor then uses his or her affected arm repetitively and intensively [for a period of time].” In Rachel’s case, her OT person suggested that we use a cast, not a sling, on the left arm for a period of 30 days.
The day before school let out for the summer, a nurse bound up her left arm in a cast. The next day, every one of her classmates signed it, wishing her well. I don’t remember her freaking out at all about this cast business. She seemed to understand its purpose and our goals: to get Miss Rightie to do more work and stop Miss Leftie from doing anything.
Cast management required planning and patience. We had to keep it clean and dry. For example, if I wanted to take Rachel for a walk, I had to keep a plastic bag handy in case it rained. I also had to shrink-wrap her arm every day we took showers. Inconvenient? Yes, but if that cast inched us closer to her playing catch with me, then it was worth the effort.
Hey, what about that bloody expensive medication she was on? You know, at the U of M?
Right before we removed the cast, the nephrologist discontinued the Soliris infusions. Since March, we started weaning her off. It was time to do it, not just because of the expense, but we wanted to see how Rachel handled it. Little by little, we let more time- lapse between doses, and each time, Rachel’s blood work remained steady. The theory was that her recovery had shifted gears to her own body doing the healing, not the drug.
So, at the end of June of 2013, the folks at the U of M removed her port, which was surgically placed into her chest in March of 2012. That’s 15 months for it inside her body. I was mighty glad to see it gone.
Ok, you can take a walking break once you pass that mailbox. Remember cast away day?
With the port gone, it was time to remove the cast. The appointment was an early one, yet my mother met us at Gillette. Like my father, she loved life’s big and small adventures.
The nurse smiled at Rachel as she grabbed scissors and started freeing her from the cast. I watched my daughter as she witnessed the nurse cut the top layer and unravel the rest. At one point, her thumb sprang free of the gauze, and I could tell she was itching to give us a thumbs-up. With the cast completely off, Rachel looked relieved and fascinated. She was looking at her hand as if she hadn’t seen it for some time.
She was now free of a cast, a port, an expensive med and a daily dose of antibiotic that she had to take while on Soliris. I felt as though this was quite a turning point in her journey.
As July 2013 began, I started ratcheting up the work in the gait trainer. One weekend afternoon, I had Rachel in it, a walker that is equipped with a seat for her buns and straps to keep her legs from scissoring. Once she was secured, I turned on my uber-cute cheerleader self.
“OK, Rach, let’s see some big steps!”
Unfortunately, my rah-rahs turned into anger faster than I wanted it to. Why? She wasn’t walking. She was sitting. Or she was flopping. I felt my frustrations coming, like the smell of rain before it spits onto hot pavement. And I knew any true display of anger really wouldn’t make a difference. So I collected myself enough to speak, not yell, into her ear. I became Militant Mommy, trading in the pom-poms for boots.
“Rachel, you have to learn how to walk. You really have no choice in the matter, because I just can’t see you in a god-damned wheelchair for the rest of your life.”
She cried for less than ten seconds. But then…she got pissed and stomped out steps in the living room.
“Now that’s some good walking Rachel. Much better.”
I suppose swearing into my daughter’s ear will never get me a Nobel Parenting Prize, but connecting to that Fighter in her, poking at her undesire to walk, prompting real steps is all I really wanted. And it worked.
So began another round of “Rachel’s Boot Camp.” Allowing only Sunday as a day of rest, every morning, when I heard her call my name, I calmly put down my coffee, collected her tennis shoes and gait trainer, and entered her room. I said sweet things first, stroked her golden hair, brushing it away from her copper eyelashes. Once the small talk was done, I, the Militant Mama, strapped on her AFOs and shoes and placed her into the gait trainer. I set up her juice-box on the entertainment center.
“OK, Rachel, once you walk from the hallway to the television, you can have your juice-box, and I’ll pop a cartoon on.”
Some mornings were better than others, but since this military approach began, her walking improved.
We did laps when the commercials hit. The laps take us from the living room to the kitchen to the office and back into the living room. Each day, I sensed her taking more ownership of the movement. I prodded her, forcing her away from flopping, impulsively grabbing at objects, and complacency. I envisioned her, someday as high school class valedictorian, giving a speech where she thanks me for kicking her in the ass, so she can walk.
By November 1st, 2013, I had taped the Monster Dash race tag onto my wall. Running ten miles was work, but the strangest feeling came over me when I finished…I didn’t want to stop moving. My next goal loomed ahead: a half marathon.
* * *
“Are you sure you want do this?” Jim asked. His face bore a look of surprise and concern.
“What? Run the half marathon? You bet. Yes, I wanna…”
“Are you aware of how long that is, Melissa?”
I laughed as I responded. He was right to be worried. “Yep, it’s 13.1 miles. I know. I knew it even when I signed up. Shocking, huh? With my math skills.”
“Have you even run that kind of distance?”
“Well, no. But when I finished the ten-mile race last October, I felt like I could have kept running.”
“Another 3.1? Meaning you think you could have run around Black Lake AFTER the ten miles you finished?” he said, pointing out the deck door at the lake across the street from our house.
“Yes,” I said, nodding my head slowly to indicate my comprehension of his thoughts…and concerns.
“Look, do what ever you want, but just…just be careful. You know, we need you…”
“I know, I know. You need me, and you need my health benefits. I know. But I’m doing this FOR my own health.” I bent down and kissed his freckled, bald head. I wondered if he knew that his concerns, while legitimate, were only fueling my desire to try.
And I had to keep moving because of my own daughter’s display of trying. Certainly, she didn’t want to work on walking all the time, but she continued to make gains in other areas of her life. Her brain continued to tick, and her ability to recall strengthened.
She often turned to me and said, “Dadda, da-da…”
“Daddy is at work,” I explained.
“Wor-,” she said, attempting the simple word.
She also learned that Daddy has two jobs. To track this, she used one finger for job one, and two fingers for job two. If I say that he’s delivering pizza, she held up two fingers.
We introduced new and different games, and she liked playing them. The change up from CandyLand was quite a gift. On one of the days that my mother had Rach and Shoshana Lou for an afternoon, they were playing a game called Dog Bingo. (We have Cat Bingo here at the house, and we played it often.) Rachel was able to locate animals on her board with laser speed. Didn’t seem to matter whether it was dogs or cats, she could find it fast.
Speech was another place of effort. Carrie Ann, the newest speech therapist on the team, offered her own approach to the work they did on speech and sounds. She still engaged in the fun of a game, but she also worked on listening and following instructions. While trying to be a fly on the wall, I listened to Rachel make new words and sounds that I’d never heard at home.
One could argue that the instructions were simple: “Put the bottle under the baby.” But Rachel complied. During a game, Rachel could say, “your,” as in it’s “your” turn. While reading books to Rachel, she serenaded me with the letter “t,” saying “T-ah…T-ah…”
Her speech device was still a part of the sessions, but it was about 60 percent her voice work, and 40 percent use of the device. I had this deep-seated thought all along: someday we won’t need that damned machine. Rachel’s own brain and vocal chords clicked along like an engine.
* * *
As spring came, I pined for warmer days and dry running paths. Somewhere along the way of my running career, I flipped from loving the treadmill and fearing running outdoors to the opposite. While I’ve not attempted winter running, I do adore ditching the treadmill for pavement. With that half marathon looming ahead at the top of May, I yearned to be outside.
Little by little, I worked on adding more distance. I took full advantage of the trails near my house, which offered flat terrain and beautiful landscapes to feast on. As race day for my half marathon neared, I was able to finish 11.5 miles in training. I read somewhere that adrenaline can carry runners to the finish line, even if their practice runs fall short.
As I came home from a run in late April, Jim was unearthing the deck furniture from its protective tarp. He opened up the grill, new as of last summer, cleaned out the insides, and started a new bed of coals. Earlier he had bought steaks and was hankering to cook out.
As I headed in to take a shower, Rachel made it clear that she didn’t want to watch television: she wanted to watch her father clean out the grill, place charcoal into it, light it up, and watch the flames dance.
“Rachel, don’t you want to watch cartoons?”
“No,” she said, plainly and clearly, shaking her head as she spoke. Suddenly, she launched into a string of no-no-no-no. Most parents would hate this; it was music to our ears.
“Rachel, that grill is really HOT,” I pointed out. “HOT. Can you say, HOT?”
“HO-O-T,” she said. She repeated it again.
To hear her say “no” was another prayer answered. And by mid-May, she added these to her daily list: blue, happy, away, Grandma, and baby.
On the Saturday before my half marathon, I realized at the last minute that there was no packet pickup on the day of the race. Jim happened to be home, so I tossed on some clothes, told him where I was headed, and dashed out the door.
Once there, I collected my tee shirt, my map for the course, and a bumper sticker with 13.1 on it, and of course, the best part, the racing tag.
The next day, I was up and out early, riding the shuttle that took me to the starting line. It’s only at this point that I felt nervous and wondered if I could finish this damn race. But my sister-in-law, Amie, advised me wisely as she cheered me on in the weeks before the race: Just put on foot in front of the other, Melissa. She was right, of course.
Race day was glorious for runners: cool but sunny. No rain. The lake was a shiny, blue gem – a beauty to behold as I focused on breathing, strides, and moving my arms in the right rhythm for long distance running. Another thing I love about races are the strangers I meet, applauding me along the way. At one point, I was huffing and puffing to cross another mile, and a man was smiling and hollering wildly, just for me. I said, “Hold on! I’m coming for that high five!” Life can never have enough cheerleaders.
In less than three hours, I crossed the finish line. I found (and embraced) Jim, who’s relieved, proud, and cold. The day was perfect for runners, but chilly for everyone else.
“Did you run the whole way?”
“Nope. I walked a bit each mile. But I ran it about 85 percent, and took power-walking breaks when I needed to.”
Jim patted me on the back as I caught my breath. I held Rachel and nuzzled her. I told her I loved her and showed her my medal for finishing. That feeling of invincibility returned, and I decided that by 50, I wanted to go all the way and complete 26.2 miles. In the meantime, I’d look to running to manage the diabetic beast and to keep my hope of watching Rachel’s full recovery manifest.