The Spark: A Mother's Story of Nurturing Genius (16 page)

Midmorning, I went into the kitchen to make scrambled eggs for
breakfast. I pulled the carton of eggs out of the fridge, put it on the counter, and thought,
I am going to have to sit down to crack these eggs
. I scooted a chair over and sat down on it, and two thoughts occurred to me.

The first was,
Wow. I have to sit down to make eggs?

An average day for me meant chasing after twelve toddlers for a minimum of thirteen hours, usually while carrying a baby in a sling across my chest and another on my hip. When you run a daycare, you don’t need a gym membership; you usually don’t get a break until 7:30 at night, after the kids have gone home. So the fact that I couldn’t muster the energy to scramble some eggs was odd, to say the least.

The second thought was,
Huh. That’s interesting. I can’t move my left arm
.

It wasn’t scary or painful, simply a fact. I could no longer move my arm—or anything else on the left side of my body.

I sat there for a while until Mike came in, carried me to the car, and drove me to the hospital. At age thirty, I’d had a stroke.

Waiting in the hospital that day, I found myself desperate to get back home. If I wasn’t there, who would do what needed to be done? I was coaching Jake through his days at kindergarten, and those play-by-plays of the day to come weren’t tasks I could delegate to someone else. I had Wesley, who could actually choke and die if someone gave him liquids that hadn’t been thickened, and who still couldn’t really move by himself—not to mention having to coordinate the schedules of all his therapists. And I had my brand-new baby, Ethan, who needed his mother.

That night, I felt truly afraid. What would happen to the kids—all of them—if I wasn’t there? If an inexperienced caregiver were to give Nancy, one of the children I had in the daycare at the time, the wrong meds (or, worse, miss a dose altogether), she could very well have a fatal seizure. Autistic Ben was a runner, which meant that as soon as you took your eyes off him, he’d make a break for the door. If you didn’t watch him every minute, he’d be gone in a flash. (Many autistic children die this way.)

Then I had another, terrifying thought: What if I had another
stroke? What if I didn’t wake up at all? What would happen to the boys and to Michael?

Instead of sleeping that night, I sat up and composed letters to my sons. They started out as lists of all the wonderful, ordinary moments I wanted them to remember: letting our fingers trail through the water behind the boat we were paddling on the lake, getting sticky from the s’mores we’d made in the backyard, curling up to watch a movie under a fuzzy blanket with a gigantic bowl of popcorn.

But by the time I was done, the letters had morphed into a catalog of everything I loved most about them. I asked them to use their gifts to help one another. I asked careful, thoughtful Jake to check in on his impulsive brother: “Let Wes have his Maserati. But make sure he has a 401(k), too?” I asked loving Wes to make sure that Jake had fun and to be there for his brother on the inevitable day when Jake’s meticulous calculations didn’t add up perfectly. To Ethan I simply wrote, “Don’t ever be afraid to be who you are. Find out what you love to do and do it.”

I finally got into bed at about four o’clock that morning, filled with a deep and abiding sense of peace. If I couldn’t be around to help my sons hold on to who they were, at least the letters I’d written would be there for them.

Obviously, I did wake up the next morning, and our new life began.

Even after I was finally allowed to go home, my condition required a tremendous adjustment on everyone’s part. I was basically paralyzed on my left side. My mouth drooped on that side, I couldn’t grasp things with my left hand, and my left leg dragged. Often Michael would have to physically support me so that I could walk.

A common household word such as “couch” or “car” would be right on the tip of my tongue, but I was unable to produce it. Sometimes I’d substitute another, completely inappropriate word for the one I meant: “The groceries are still in the trunk of the elevator.” Or, “Did you get your lunch from the closet, Jake?” (Jake, being Jake, would dutifully go and check the closet for his sandwich.)

With all the doctors’ appointments I had to go to, Mike became my arms and legs. He also had to take time off from work to help with the
daycare, but he’d had devastating news there, too. His longtime boss and mentor, Tom, had been diagnosed with advanced lung cancer. (He would live only a couple more months.) Tom had been one of the first people in Mike’s professional life to see and to nurture his potential. He was a father figure to Mike and his champion. Losing Tom would be a devastating emotional blow for him.

It was also, unfortunately, one with practical consequences. Tom was replaced by a much younger man, someone less sympathetic to the people Tom had encouraged. So at a time when Mike needed a lot of flexibility and generosity from his workplace, he was instead worried about losing his job. On top of helping with the daycare, taking me to doctors’ appointments, and keeping up with work, Mike was still going twice a week to the children’s hospital to continue Wesley’s aquatic therapy. And he was running the household, doing all the jobs I’d always done, such as shopping for groceries, making lunches, and doing the laundry. I could give instructions from the couch—this yogurt, not that one—but I couldn’t drive or shop or do anything that might actually have been helpful to him. He was on his own.

In my eyes, during that time Michael was a superhero. I’d had years to adjust to the daycare, to the addition of special-needs kids to the daycare, to the rigorous demands of therapy schedules. I’d had a lifetime of experience in running a household. Michael hadn’t had any of that. And yet I couldn’t believe how strong he was, and how patient. I marveled at his energy. Being physically impaired made me even more grateful—both
to
Michael and
for
him—every day.

But it was too much. Neither of us knew it at the time, but Michael was headed for a personal crisis. Ultimately, however, I don’t think it was the grueling schedule, as demanding as it was, that got to him. It was something more.

Mike certainly understood the enormity of Jake’s autism and how sick Wesley really was, but he’d always been able to get away from the day-to-day grind by getting in the car and going to work. There was something about actually having to get through the day
—my
day—that brought the reality of the life we’d been living for the past five
years home to him with terrible force. He’d never stopped to fully comprehend what we were up against, the overwhelming odds. Every day was a skirmish in a war that didn’t seem remotely winnable. What could possibly happen to turn it around?

When I was having Jake, Michael made a solemn vow that he would take care of me. I believe he took that vow even more seriously than the vows we’d made to each other when we were married. At my bedside that day, he told me that he would do everything in his power to keep me happy and comfortable, no matter what. And he had. He had supported me through Jake’s autism and therapy, when the doctors told us Wesley might very well die, and through the exhausting uncertainty of Little Light. But now I was crumbling before his eyes, and in his mind that meant he had broken his promise. Somehow, he had let me down, and he felt like a failure.

The tension within him was building, but I didn’t realize it until one wintry night, after all the boys were in bed. We were watching television together on the couch; I might even have been napping a little. All of a sudden, Mike said, his voice breaking, “I can’t fix this.” Then he got up, grabbed his truck keys, and left.

I had no idea what was happening. We’d had no argument. In fact, I felt as though we’d never been closer. Plus, I was starting to feel better physically. By that point, I could walk unaided and was beginning once more to participate in daily activities.

I was truly afraid. The streets were icy and wet, and Mike had seemed so shaky and unlike himself when he left, I was worried that he wasn’t in any condition to drive. Panicked, I called my brother, Ben, to go looking for him. It wasn’t until I hung up the phone that the gravity of the situation hit me: Michael had left, and I had no idea if he was ever coming back.

My mother came over, and together we phoned every one of Michael’s friends to see if anyone knew where he was. None of them had seen or heard from him. I knew we had no money for a hotel, so that was out. Ben drove around looking for Mike all night. By 3:00 a.m., when there was still no sign of him, Ben started peering into ditches
and ravines for any signs of his car, and my mother took the phone into the other room and called the local hospitals. I sat on the couch and drank pot after pot of the herbal tea my mother brewed for me.

Ben came back as the sun was coming up. He gave me a hug and quietly said, “I’ve looked everywhere. He may not be in the area anymore, Kris. I think we have to admit the possibility that he isn’t coming back.”

I couldn’t accept that, and I convinced Ben to drive out one more time with me while my mom stayed with the boys. Finally, I spotted Mike’s Cougar in the parking lot of a hotel right near our house. He’d spent the night out there, in the freezing cold, less than a mile away from home. I was shaking and limping badly as I got out of Ben’s truck and approached the Cougar. Ben waited in the truck, his face turned away to give us some privacy.

It had been a long night, and I’d had a lot of time to come up with reasons why Mike might have walked out. First and foremost was my disability. I hadn’t been disabled when he’d married me, but now, with my mouth sagging on one side, unable even to return a hug with both arms, maybe I was grotesque to him. As soon as I saw the look of anguish on his face, however, I knew exactly what had caused him to snap. I could almost hear what he’d been thinking, sitting in his truck that whole long, lonely, cold night:
I promised to keep you healthy and happy, and I can’t even accomplish that. If I fail at keeping you safe, then I’ve failed at everything
.

Mike had always been the brave one, the calm one, the one who could make it all better. But that day, it had to be me. I got into the front seat, took him in my arms, and said, “We’re going home.”

And so we did. After that night, our relationship changed. I wouldn’t have thought that we could get any closer than we were. I didn’t think there was anything about him I didn’t know. But maybe I hadn’t truly understood the depth of his commitment to our family and to me. We’d been strangers when we got married. All the adversity we’d been through hadn’t broken us. Against all the odds, we were still together, still madly in love. But after that night, it felt as if we finally
did
know everything there was to know about each other. At last it had
sunk in, for both of us: There was no force on earth that could separate us.

About a month or so later, a doctor finally diagnosed me with lupus, a chronic autoimmune disorder. It sounds ridiculous to say that it was a relief to find out that I had a degenerative and debilitating disease for which there is no cure, but it’s true. Now we had an explanation for my poor health: the terrible neuralgia that made my face feel like someone had inserted hot needles into it, why even a garden-variety cold would hit me so hard, and, of course, why I had had a stroke at such a young age. My doctor even explained that lupus eases up in the summertime and gets worse in cold weather, which was why my symptoms had been intensifying as the winter wore on. The lupus diagnosis also explained my difficult pregnancies. My own immune system had been trying to reject the babies. It was a miracle I’d been able to have them at all.

The diagnosis also helped Mike let go a little of his vow to take care of me. He knew that he couldn’t cure my lupus.

Today Michael still does all those little things that make my life around the disease a bit easier, like making coffee without me asking him to or bringing me a glass of ice water when I sit down to watch TV. I know that when he goes to the grocery store, he chooses which checkout line to wait in based on whether it has my favorite chocolate treat, Rolo. He can’t stop the winter from coming, but he can make sure that I get a pair of fuzzy boots, so at least my feet are warm.

And yes, every week he brings me roses. Our house is filled with dried roses—on top of the kitchen cabinets, at the turn of the stairs, in vases throughout. And with every fresh bouquet, I am even more grateful for what they mean to Michael and me.

R
ecovery from a stroke is slow going. It takes a long time to rebuild your strength. To this day, when I’m overtired or sick, the grip in my left hand isn’t particularly strong, and I often call on the boys to lift heavy packages or books.

In the year after my stroke, our life gradually returned to normal, or whatever normal was for us at that time. Michael left Target for a new job at Circuit City. Peaceful Ethan continued to hit all of his developmental markers. He talked on schedule, walked on schedule, and (maybe most important for me) stayed cuddly. Every time we crossed one of those childhood milestones off the list, I breathed a silent sigh of relief.

But the biggest news had to do with Wesley. The aquatic therapy had continued to pay off, so that his stiff little body was a great deal more flexible. As a result, he could move more easily, and eventually, around his third birthday, he began to walk.

And then he galloped and jumped and sprinted and leaped and crashed. Once mobile, Wes didn’t just get out of bed in the morning; he bounded out of it like Tigger in
Winnie-the-Pooh
, usually taking a piece of furniture or one of his brothers out in the process. If I asked him to get me the Scotch tape from the kitchen, he’d turn into a race car to do it, squealing around corners with two wheels off the ground.

Suddenly, our whole house was an extreme-sports obstacle course. Wesley couldn’t pass a couch without bouncing on it, a bookshelf without climbing it, a staircase without hurtling down the last six steps. Wesley was never in a room by himself for more than ten seconds
before you’d hear a crash. Our middle son was suddenly on the move, and Mike and I couldn’t do much more than laugh at his antics. We resigned ourselves to the inevitable cuts and scrapes and bruises (and the occasional emergency room trip). What else could we do? Wes had a lot of lost time to make up for, and nothing in the world was going to slow him down.