While running the Get into Gear race, 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!”
Crossing that finish line for presented me with a new feeling I’ve never felt before: the runner’s high. Better than any drug on earth is the sweeping, heart-pumping, soul-singing feeling I got when I completed that race. I finished with a PR, (runner’s lingo for personal record). I felt as though I could do anything.
But so much of training as well as stroke recovery is like dealing with traffic lights: I’m either resting, reflecting, or refueling, or I’m going, going, going.
(Wait a minute…Isn’t that what life is all about?)
Immediately after I finished that race, I could not rest on my laurels too long, as Jim’s Ford truck had to be replaced. We were in a bind: it required so many repairs that could have racked up a sizable bill, so we decided to check out the Honda dealership in search of a good deal. I bent down to kiss Rachel, who was smiling with joy and pride at me, loving every minute of race time with her mother.
“Good luck,” said Mom, wheeling Rachel toward her car. “Take your time! We’ll just hang out until you get back.”
Jim and I headed to our local Honda dealer, found the car salesperson, Peggy, a good family friend, and told her how Jim’s truck required such expensive repairs, that it would be cheaper to replace it with a “newer,” gently used car. We test drove two or three cars. I could tell Jim was torn between a nice, red one and a less colorful one that was cheaper.
“Well, what do you think?” he said, as we sat in the red one.
“Honey, you are working two jobs now. You need a solid set of wheels no matter what. And with the pizza job, you’ll more than pay for it with tips and all. Which one do you like?”
“Well….this one. The one we’re in now.” He looked up at the roof window, admiring the light coming in. “This is likely the nicest car I’d ever own.”
“Then let’s get it. I like it too, honestly.” I’m sure my race-induced endorphins were influencing my own decision. But it was a nice car. And Rachel’s wheelchair would fit in the back. And the price seemed right for what he was getting. But I could tell he was hedging.
“Hmm…Well, if I bring in at least $50 a night in tips, we should be able to make this work.”
“Then let’s go back to Peggy and get going on this. I’m sure my buddy from high school, Don, will work something out financially. I mean, really, I’m still shocked about getting $1200 for my old CR-V when we traded it in for the Odyssey.” (Before we left Gillette in St. Paul, we traded in my beloved CR-V for the bigger van to hold Rachel’s conveyances.)
“Let’s not forget that your mother helped us with a down payment on that van. We have a tiny down payment today.”
“Yes, but Don is still my friend, and he’s going to do whatever he can for us.
Jim gripped the steering wheel, taking a deep breath, and smiled. I could tell he really wanted this car. “OK. Let’s go.”
By that afternoon, we rolled out of the parking lot with a new set of wheels for Jim. And as I predicted, Don crunched the numbers and made it a sweet deal. (As of this writing, Don no longer works there. I’m even more grateful for his help now.)
So with a new(er) car for Jim, and the gift of work that summer for me, we were ready to roll. But where were we headed? A cast for Rachel, a Wisconsin wedding, and week-long guests from the East Coast, plus her port removal and the conclusion of her Soliris infusions. Life presented the preverbal traffic light, in which we all stop and go, stop and go, stop and go…
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 offer this as a definition: “Constraint-induced movement therapy (CI) forces the use of the affected side by restraining the unaffected side. With CI therapy, 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, our OT gal 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, the staff at the Minnetonka clinic bound up her left arm in a cast. The next day, every one of her classmates signed it, wishing her well. As I stop and reflect on this, 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 Lefty from doing anything. Stop and go, right?
Managing that cast, keeping it clean and dry was its own battle. 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 when we took showers. Inconvenient? Yes, to stop to get a bag before going on a walk is too many steps, for sure. But if that cast somehow inched us closer to her playing catch with me, then it’s worth the effort.
Right before the thirty days of castdom were up, something else came to an end: the Soliris infusions. Children’s Hospital used this drug after the second stroke hit. We believe soundly that it was a life-saving decision, and her nephrologist mentioned to my mother and me that it likely reversed some of the damage of the strokes.
Since March of that year, we had began 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 “rock steady.” The theory among the Bus Drivers and Dr. Lydia was that her recovery had shifted gears to her own body doing the healing, not the drug.
So, with that said, at the end of June, 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 am mighty glad to see it gone. And thus ended the expensive infusions with the pull of that port.
With the port out of the way, it was time to get the cast off her left arm. The appointment was an early one, yet my mother met us at Gillette. She wanted to see that cast come off too.
The kind nurse smiled at Rachel as she grabbed scissors and started freeing her from the cast. I watched Rachel as she witnessed the nurse cut the top layer and unravel the rest. At one point, her thumb sprang free of gauze, and I could tell she was itching to give us a thumbs-up. Once the cast was completely off, Rachel smiled brightly, part relief, part fascination. She was looking at her hand as if she hadn’t seen it for some time, and 30 days did seem like a lifetime for us.
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. I am proud that she put up with the cast as well as she did. We had a calendar printed out, crossing off the days, and I think that helped all of us. The traffic light of life continued to flicker: green, red, green, red…
As July 2013 began, I started ratcheting up the work in the gait trainer. With her big brother, Dylan, and his lady, Ali, getting married, I really thought I could lean on the gas and get her walking by the end of July. (Yeah, right, Melissa. Dream on.)
One weekend afternoon, I had Rachel in her gait trainer. (Imagine a walker that is equipped with a seat for her buns and straps to keep her legs from scissoring.) I got her into the trainer and turned on my cute cheerleader self.
“OK, Rach, let’s see some big steps. Wouldn’t that be great to show Dylan and Ali some real walking on your part?”
My cheerleading turned into anger faster than I wanted it to. Why? Because she was not 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 what happened next was more than I bargained for. She got pissed. So pissed that she 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 Nobel Peace Parenting Prizes, but connecting to that Fighter in her, poking at her undesire to walk, prompting real steps is all I really wanted to do. And it worked.
So began “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 is 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 would 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, 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.
One Saturday, Rachel woke up early, and suddenly, she was next to me in bed. I had declared it my turn to sleep in. I wasn’t getting up if I could help it.
“Jim, her tennis shoes are in the living room.”
“That’s nice.”
“I’m just telling you.”
“And why do I need to know this information?”
“Boot camp. It continues. And it’s your turn, honey.”
There was silence. The kind where I wonder if Jim is trying to figure a way out of doing boot camp.
“So, get going, General Daddy.”
All of a sudden, Jim tore the covers off our bed with a cold poof of air. I was laughing so hard, I scared Rachel, but I couldn’t stop.
“I….am….not…getting….UP!”
It wasn’t working. But while I sat on the couch, sipping coffee I didn’t have to make, I watched Boot Camp happen. And Jim and I saw measured improvement in her walking. I just wish it was in time for the wedding, but green lights to better walking was better than red lights of nothing.
While boot camp was underway, I still was wrapping up summer school as Jim worked two jobs. We also were chipping away at house projects all throughout the spring to get ready for his brother, Kevin, and his wife, Amie, and their daughter, Mackie, who were staying at our house for the week that included the wedding.
Jim gave our bathroom face lift. We set up a space downstairs in our very unfinished basement for them to sleep in. My mother made new curtains for our kitchen and office with her Singer sewing machine. One day, Jim rented a power washer to scrub off the deck. I snapped a photo of him, sent it to Kevin and Amie, sharing how Jim was getting ready for their arrival.
Kevin sent a text back: “Awesome! You’ve GOT to respect the deck!”
I had started reaching out to Kevin and Amie through emails, Facebook, and texting, getting a sense of what they were like. I also heard the other half of conversations that Jim and Kevin had over the phone. I was excited and nervous to meet them. The looming question for me was would we all get along?
I was also a little nervous for Rachel. She was easily frightened around men she didn’t know. So I asked Kevin and Amie to shoot video of themselves, doing normal, everyday things, like Amie getting ready for a run, or Mackie, hanging out in her bedroom. Sure enough, they complied, and the week before they came out, Rachel looked at my phone at video of Amie, right before she went for a morning run, Mackie, chomping on cereal, and Kevin, sitting at his desk.
Every time she watched those videos, she smiled brightly. Those videos created a green light to new people, making things potentially less scary.
On July 25, the day the East Coast Reids came, our house never looked so good. Sure, some of the things we did were “lipstick on a pig,” but I was still pleased with all of our work. My mother came out to the house, ready to meet the new family members.
Jim was nervous but excited. After Kevin sent the text that said they’d arrived, Jim looked around, grabbed his hat, and said, “Well, here we go.” Off he went to retrieve his family.
On my instruction, the trio walked in very slowly, gradually approaching Rachel for the first time, live and in person. It was a beautiful moment, for Rachel beamed, giggled, and was at ease. Rachel displayed a grace that surprised me; those videos did the trick of making her happy to meet this wing of the family. So began a week filled with new family, a wedding, a seven-hour trip to the MOA, a very late night of storytelling, good food, and lots of laughter.
I found Kevin and Jim to be so similar: in their baldness, in their gestures, in their voice intonation, and in their facial expressions. Both men have big hearts: don’t let them fool you into thinking otherwise. I enjoyed watching the brothers interact. Their relationship has been growing and deepening for the last few years, and it was a delight to watch it coalesce right before my eyes.
In my new sister, I found Amie to be a strong likeness to my Chicagoland Castino clan. It’s fitting given her half-Italian, half-Polish heritage. With her heart of gold, she is gracious, helpful, and strong. I felt an instant bond with her from the moment I met Amie. And it’s only right that we bonded….We’re Mrs. Reids: the strong, the proud, and the patient!
With Mackie, she was often smiling. Or, once she figured it out, she was always trying to get Rachel to smile with snazzy dance moves or belting out Dora songs. She and Rachel got along famously. Mackie offered to push Rachel in her stroller often, which impressed me. By the last night, we all noticed that Mackie and Rachel looked alike with the facial expressions and hair color.
So after a barbeque on the deck, the next morning we all headed to Wisconsin for a wedding in the Enchanted Barn. This is a venue only available in the summer months. It’s a beautiful place, in the middle of nowhere. And the wedding itself was terrific, even with the odd cool weather. My stepson, Dylan, and now stepdaughter, Ali, made a handsome wedded couple.
On Friday afternoon, all the girls of the wedding party along with Amie, Mackie, Rachel, and I met at a local nail place for pedicures. My mom came along and took photos. The place was nifty in that it had two seats just for little girls to get pedicures. Rachel just loved every minute of it.
At one point, Rachel held the nail color she wanted in her left hand while the person working on her toenails was stripping off the old polish. I leaned over to Rachel and explained, “So, she’s taking off the old color of pink so that she can put your new color on.”
Rachel turned to me and said, “Oh.”
It was so contextually appropriate, I knew she was saying, “Oh, I get it.” That small moment floored me. Even Ali, in all her wedding excitement, said, “Did I hear her say ‘Oh.’?”
Rachel was present, tracking everything in this Rice Lake, Wisconsin nail place. Tears welled up in me as joy spilled out. She also topped that moment off with this: when the lady asked Rachel “color?”, our Fighter promptly handed her the bottle of her nail color choice. Just like that…
The last night the East Coast Reids were here, we ate at the Minnetonka Drive In. It was one of those glorious Minnesota nights, with a gorgeous blue sky and a whiff of white clouds. We talked and laughed as we downed the burgers, fries, and shakes. By the next evening, they were home in Connecticut, and I found myself quite restless.
With visions of first grade for Rachel, and my own school year just a traffic light away, I sat down on my new couch, flicked open my computer, and started researching another race. I found two: the first one is at the top of September, and it takes place around Lake Harriet. It raises money for the trees that were lost in that storm in June. The Monster Dash is my second race. It takes place in St. Paul at the bottom of October, and of course, costumes are welcome.
Now I confess, I stink at math. As the money was draining from my bank account, I realized that I was I signed up for a 10 M race, meaning ten miles NOT a 10K race. Whoops… Since Rachel’s recovery was a consistent green light all the way, I just had to keep moving.