28

MORTAL COIL

Driving down I-87, Jason was stewing in the passenger seat. We’d overheard the doctors talking to each other in the elevator about a cancer patient. Jason said, “Some people die from cancer.” I said, “Yes. Some people do.” He paused. “Mom? Am I going to die from . . . you know . . . this?” He pointed to his legs, poking his quads with his index fingers. I glanced over at him and then trained my eyes back on the road. “It’s hard to say, Jason. Hard to say.”

I wasn’t lying. It was very hard to say, “Yes, you are going to die,” to an eleven-year-old boy. “You’re going to die young, and immobile at the very moment that your life becomes truly yours and you should be falling in love, getting laid, and reaching out for what you want in this life and making it yours.” That is impossible to say. Most of the time, it was easier to just pretend that it didn’t exist.

The social workers told us before placement that Jason had multiple sclerosis. We researched it, grieved it, came to terms with it, and committed to seeing him through it. Multiple sclerosis is horrible and, like every illness, worse in children. A few weeks later, the social worker called back, “I know I told you guys it was multiple sclerosis, but it’s not. It’s Duchenne muscular dystrophy. I always get those mixed up, sorry about that.” Interesting. “Okay, well, thanks for calling.” We researched Duchenne muscular dystrophy. I groaned, sickened. An insidious disease: assisted walking at eight to ten years, wheelchair at twelve, and mortality at twenty to twenty-five. The wasting begins in the legs and pelvic region, then arms and neck, and then general loss of muscle mass, resulting in paralysis. Most patients die of respiratory failure. If they can maintain lung function, the heart is next and last. Eyes moist, Dan shook his head, “It’s a kick in the gut.” I started crying.

As soon as we moved upstate, we took Jason to the pediatric neurologist and pulmonary cardiologist who would be tracking his illness. They did a battery of tests to establish his “baseline.” I still couldn’t really believe it, he seemed so healthy. “And you’re pretty sure he has it?” The neurologist stared at me. I explained, “There was some confusion when we got him. I was just hoping there might be a mistake, you know, maybe a misdiagnosis. He seems so healthy.” The doctor lowered his head, the bearer of bad news. “Jason has a moderate case of Duchenne’s. He will follow the average trajectory.”

We researched clinical trials, looked for breaking news in the journals and online forums. We had friends scouring the internet and sending us links. Jason was either too advanced or too old to qualify. He couldn’t be helped. Even if the answer came today, it was too late. We got on muscular dystrophy parenting sites for advice on how to stay positive, how to keep the hope alive. Most kids give up once they get in the wheelchair and realize they are never getting back out. I asked the doctors, “What should I do?” They told me to watch for signs of deterioration: coughs that aren’t productive, widening gait, fatigue, falling, toe walking. I watched.

Six months into our care, Jason and I went outside for batting practice and when I pitched him the ball, he missed and spun around, falling to the ground. He was unable to stop the momentum from his swing. Second pitch, same thing. “Mom, what’s happening? Why am I falling?” I called the doctors. Within days he had to crawl on his knees up the stairs. He couldn’t lift his dinner plate. He stared at me, scared, “It’s too heavy.” I tried to hide my shock, “I gotcha, Buddy,” grabbed his plate and helped him upstairs to bed.

The doctors put him on steroids and explained the side effects: sleeplessness, weight gain, the moon shaped face, “but the worst effects are from long term use, loss of bone density, increased aggression when a patient is coming off the steroids . . .” his voice kind of trailed off. “I guess we don’t need to worry about that . . .” Shit! We weren’t long term and we were never coming off them. “Keep watching.”

And then what? There is no cure. Doctors can increase his prednisone, and in the advanced stages give him oxygen at night and antibiotics for infections. Swimming becomes the exercise of choice and stretching will prolong comfort and mobility. We were cautioned not to let him work his muscles to exhaustion.

That was the hardest part for me: telling him not to run. When I was a kid, I remember running as fast as I could across sloping fields in the cool dusk, sweat wicking off my skin as I flew back and forth, happiness in motion. I want him to be able to run as fast as he can, fast, faster, so he can remember it forever: the burning cool in his lungs, his heart hammering in his chest, tingling and alive. “Mom, can you hold my sweatshirt?” Off he goes, running faster, faster, then smack into some weird, invisible force field. Mid-stride, his legs buckle and he crumples to the ground, laying where he falls and doesn’t move. He shakes off his surprise, sits up and waits, his legs out straight. I walk over to him, “How’re you doing?” He sits. “It’s weird, Mom, they just stopped working.” I ask if it hurts. “Not really, they just stopped working.” I rub his hair, “Well, let’s give ‘em a rest, maybe take it a little easy, huh?” I give him a piggyback ride back to the blanket. “Did you see me, Mom? Did you see how fast I was running?” I sure did. “You were awesome, Buddy, superfast. Let’s put that sweatshirt on for me.” He pulls it on, “Good man.”

* * *

We talked about muscular dystrophy in vague terms with all of the kids, providing a forum for discussion and questions. We checked in with Jason one-on-one: “Hey, Bud, how it’s going with the MD, any questions?” He wanted to know if there was a cure yet. “Not yet but they’re working on it, Pal, new discoveries every day.” Jason looked at Dan. “Dad, will I have to be in a wheelchair?” Dan said, “Well, there may come a time when you find it’s easier to get around if you have one. We’ll trust you to tell us when that is. There are a lot of other things we can do in the meantime to help with your mobility if you need it.” Jason was interested. “Like what?” Dan said, “Para-bouncing, rocket ships, personal pack helicopters . . .” Jason smiled.

Dan got a flight simulator for the computer, bought some used radio-controlled airplanes, and got us a family membership to the local radio-controlled aircraft club. He bought a buddy-box with a parental override in case your young pilot got in a tailspin, went for an outside loop, or had trouble landing. We went to air shows and flew radio-control gliders pulled into the air by little radio-controlled tow-planes. On cold or windy days, we flew our fleet of micro helicopters in the living room and stair wells. On the sunny days, we’d tip our heads back, staring into the sun, squinting to catch a flash off a rolling foil or looping tailpiece, climbing, banking, falling, “Dan. You’re a genius,” I whispered.

In the advanced stages of Duchenne’s, a young man will have the use of a few fingers, his eyes, and his voice. As a young radio control pilot, Jason could make his planes do what his limbs couldn’t; as his world pulled in, the planes could push it back out. A helicopter with a video feed means he could go anywhere. It meant he could play tag with the neighbor kids, hide and seek, peeking around corners with his remote control helicopter. Genius.

* * *

Twenty minutes into the family movie, it was clear Anthony was not interested. He was squirming and getting into it with the other kids. I told him to get his poem journal and meet me in the kitchen. We were writing a poem a day, on different places, people, events. “Okay, Anthony,” I said, totally not in the mood. “Let’s do a feeling poem today. Is there a feeling you want to write about?” Anthony thought a minute. “I feel mad.” Excellent! “‘I feel mad.’ Write it down.” He wrote laboriously in his marble composition book. He could not have strayed more outside the lines if he had tried. “Why do you feel mad, Anthony?” He said, “Because she hits me with a spoon.” I asked Anthony who had hit him with a spoon. He said, “Ms. Smith hits me with a spoon.” I whisper to him, “Very good, Anthony. Write it down.” He got stuck on “with.” We sounded it out together, “wh . . . wh . . . wh . . .” Anthony, excited, shouted “Double you!” I smiled, “Next, Ih . . . ih . . . ih . . .” Anthony was getting it. “I,” he said. He paused and looked at me strangely, smiling. “Good, Anthony. Th . . . th . . . th . . .”

He paused again, looking up at me from his work, focused and quiet. This was not like him at all. His cheeks started to flush as he worked, pausing now and then to look at me. He finished his writing, put his pencil down, and smiled. I had never seen him so centered and calm. “Super, Anthony, now read it to me.” Haltingly he read, “Anthony feels mad . . . because . . . she hits me . . . with a spoon.”

His rounded cheeks were blushing with emotion. He stared at me, smiling quietly, present and intimate. As I held his gaze, I felt I was seeing him for the first time. “How do you feel, Anthony?” He said, “Feel? Feel? Happy.” I asked, “Why do you feel happy, Anthony?” He said, “I don’t know.”

Anthony was condensing, changing form before my eyes. I watched, breathlessly, as his true self flickered. Something beautiful was happening. I wanted him to know how he got here. “You feel happy because you wrote it down, Buddy, and now everyone can know why Anthony feels mad. Why do you feel mad, Anthony?”

He said, “Because Ms. Smith hits me with a big spoon.” I saw a teaching moment and grabbed it, “Ah, a big spoon, nice detail!” I point to his composition book, “Let’s add ‘big’ so the reader . . .” He cut me off. “No, no thanks.” He held up his hand for me to stop and pulled the book back towards himself.

“No? You like it the way it is? We’re good for today?” He nodded. He flipped a few of the pages back and forth in his poetry journal and then stopped. In a lucid, quiet, age appropriate voice he said, “Anthony’s . . . feelings . . . is gone.” He leaned back in his chair, exhausted and excited. He yelled, “Give me kissy, Mommy!” I embraced him and kissed his cheek.

* * *

“You’ve got a million dollar baby,” his doctor said, pointing to the two-inch scar on Anthony’s left thigh. It was the scar of last resort: invasive, painful, and expensive. “By the time they do a muscle biopsy on a two year old, they have run every other possible test and have nothing left to try.” Anthony had suffered unexplained seizures as an infant; his eyes would roll back in his head and his lips would turn blue. Even though he was born full-term, tox-negative, the doctors thought maybe he had lesions on his brain, but further testing showed nothing. He was four months old when he was put in foster care, described as listless when not projectile vomiting. The muscle biopsy gave no answers, just more bad news. His muscle tissue had no dystrophin protein; he was a Duchenne’s boy. Muscular dystrophy, completely unrelated to Anthony’s original symptoms, is an X-linked recessive gene meaning his biological brother was potentially affected as well. That’s how they found out Jason had Duchenne’s—not that early treatment makes any difference, because there is no treatment. Anthony’s Duchenne’s was extreme. He was four years younger than Jason but would decline at the same rate as Jason, maybe faster.

I took Anthony to one of his teachers from public school for an informal assessment of his academic progress. After a year of home school and enormous effort trying to wake his potential, would he still be categorized as learning disabled? She asked, “Have you ever considered letting him be, just letting him live his life? I mean, given his medical condition?” It was a fair question. Educating these boys was a huge investment of time, money, patience, and energy for all involved. No one would expect our boys to seek gainful employment, few would even suggest it. But to let him be? Anthony has some pretty serious emotional and behavioral issues, easy enough to manage if he’s strapped in a wheelchair. I could pull the plug on his electric wheelchair if he started acting out, but aggression doesn’t go away with lack of mobility, just power. It’s not moral agency unless you have a choice.

I read about another mother who had two sons with Duchenne’s. When she found out, she asked the doctor what she should do. He told her, “Go home and love them up.” She wasn’t satisfied with that; her maternal instinct demanded she act. She raised her boys, raised awareness of the disease, raised money for research, and raised hope for her boys and muscular dystrophy families everywhere. And when her boys died, she kept fighting, a rare and noble act when your life is devastated by the loss of your personal motivators.

That mother had always loved her boys, from the minute they were born. Those boys were hers, and she was theirs. Their formative years were safe and nurturing, their needs were met, bonds were formed, and trust grew like their long bones in deep, peaceful sleep. They were loved. Unlucky, yes, to have a punishing, fatal disease. But I dream of her boys, their hearts grounded in love as their young bodies ground to a halt.

Our boys are unlucky among unlucky boys. They had no love, no trust to buoy them, no platform on which to discuss their feelings, their fears. They survived behind complex defenses; they fight, but do not trust. That is why I can’t just let Anthony live his life. I have to teach him how to love and respect, so he will know he is loved and respected. He must learn the value of all life, so that he can value his. Knowledge is power: over himself, his world, his self-expression, and self-control. Like all MD parents, ours is a race against time, a race for a cure, for Duchenne’s, but also our societal ills, a race for love and trust as their little bodies sit in slow setting cement.

Am I dreaming too big? Asking too much of his global delays? All I know is that Anthony feels mad because Ms. Smith hit him with a spoon. He wrote it down, he said it aloud and something changed, he saw himself anew. If we can teach him to write and read, paint, sing, and express himself, he can know who he is. I can’t just let him live his life; not until he knows it is his life to live; not until he knows who he is, that he is mine and I am his.

* * *

The boys fare better than expected. The doctors think that it has something to do with them not growing. Tiny bodies have tiny levers, their muscles have less work to do and muscles don’t tear if they don’t grow. It’s a bizarre and double-edged sword. Anthony is eight and looks like he’s three, Jason is twelve and looks like a seven year old. They are spoken down to, overprotected, and unable to go on roller coasters. The police picked Jason up walking home from lap swim, mistaking him for a five year old that had wandered away from home. “I hate this,” he said. Of course he does. It doesn’t help that Jimmy, also twelve, looks like he’s seventeen.

The boys’ therapists have told me, “You will need to be careful.” What they mean is that when the boys really start to go, our whole house could crumble. They warned me of entire families getting depressed, especially the parents. This disease could redefine us. We may become a muscular dystrophy family, instead of a big, adoptive, multi-racial family. We’ll trade in our two canoes and passenger van for a small bus with a lift and two wheelchairs. Our kids may be the survivors of brothers instead of survivors of foster care.

I will not fail. I will be strong and fierce, strong enough for all and the children will take their cue from me. Death is a part of living. I will show them how it’s done, how to keep living when our hearts are broken, again and again. I will lead them, take their hands, and walk with them, across five stages of loss for the two we have lost. And if I falter, stumble and fall, I will sell my soul for self-delusion, the devil’s denial. I will swear uncontrollably, swear to be strong, swear and swear as I clean our clothes, steep our rooms with fragrant flowers, fruits and melons, hire pianists to play for us, in a major key, in the key of G, reminiscent of our future past.

And if I fail and our grief turns sour, and the tar covered vines of depression crawl beneath our sills and up our walls, I will beat them back, palms up and fleshy, beat them and beat them and hit them with a spoon, “Get out! Get out!” I’ll rear up on my hind legs, bare my teeth and roar, my baby’s mama bear, “You want this house? Then you go through me! Nobody hurts my kids! Nobody hurts my kids!”