The Power of the Powerless
Little Matthew Erickson was recently born to a loving couple who live in Huntley, IL, where my daughter and her family live. Tests done when he was four days old revealed that Matthew has cancer of the brain. His parents have decided to try chemotherapy until he is strong enough to undergo surgery. Students at the high school where the baby’s father teaches have presented him with a $5000 check in an effort to help the struggling family. Their moving story is told in today’s Chicago Tribune.
It’s about the need of a tiny child, the love of parents, and the response of a community. It brought me back to the days when I too worried daily over a little one’s life, and about the goodness of family, health care professionals, and strangers. It’s a story that my older kids know well, but my youngest two know very little. Until now, there never seemed to be a reason to tell it, as if such stories need reasons. The truth is they are hard to write, but I am learning – finally, at my age—that there is value in telling them. Little Matthew has reminded me.
On the same summer day Princess Diana married her prince in 1981, I took home a little boy who had spent the first three years of his life in a Chicago teaching hospital. Doctors estimated his life expectancy to be perhaps one year. He’d been born three months early, which back then meant that every major system in his body had been permanently affected. He had a tracheostomy, heart failure, cerebral palsy, and many, many other problems. He weighed nineteen pounds, and was unable to feed himself. At a month shy of three, he could only scramble around in a baby walker with legs as wobbly as a newborn fawn’s. I picture him now as I first encountered him: in the circular yellow baby walker, wearing his tiny khaki safari suit, his dimpled smile revealing gleaming, perfect teeth. “We can’t bear to see him institutionalized,” one of the nurses told me. “We looked everywhere for an agency with someone willing to take him. Dexter may not live long, but he’s filled with joy. He makes our day here.”
Dexter’s mom was herself ill, recovering from brain surgery,and unable to care for him at home in the impoverished area where she lived. I had misgivings as well. The one year life expectancy, and the constant monitoring of his heart and breathing scared me. Still, I sensed already we (my family, including my kids Tami and Christian) would come to love him as his caregivers did.
Finally I said yes.
At home, Dexter quickly learned to use his finger to block the hole in his neck to get the wind to form words. “Mama” was first. He grew six inches the first month he was home and was feeding himself within six weeks. Having once held the attention of nurses, doctors, and residents who admired his survival, he now held court from a stroller in our neighborhood, or from shopping carts in grocery stores, or from my arms most anywhere. The spindly, shaking legs grew stronger by the day, and within the year Dexter was walking. His birth mother stayed in touch, as we all fell more deeply in love.
Dexter’s damaged heart had been the primary reason for his doctors to think his death was fairly imminent. Digitalis had helped, and another medicine kept water from pooling in his sluggish system. I listened to his heart daily, but for the type of heart failure he’d suffered due to an infancy spent on oxygen, there was nothing else to do but wait for the day his heart muscle gave out. As expected, about a year almost to the day we had taken him home, Dexter’s heart sounds went haywire.
One morning, checking with my stethoscope, I heard unusual heart sounds. Thump - thump - thump -silence, then thumpthumpthump, quickly, then silence again for what seemed to be a very long time.
I called the chief children’s cardiologist at the University hospital where he’d once lived. Dr. Dan Scagliotti agreed to see Dexter right away. That evening he sat with me, reviewing tests, his finger tracing the wild electrocardiograph rhythm.
“I don’t like the word hopeless,” he said finally. “Sometimes we see someone survive this type of beat pattern a few months. Usually not that long.” His gentle advice was to “take him home, love him…we’ll take him off his meds. They aren’t helping anymore.”
Home we went. I disposed of his medicines and hid the stethoscope, because it didn’t seem to matter what I heard going on inside Dexter anymore. He looked fine and full of life. Every morning thereafter I awakened early to put my hand on his back to see if he was still breathing. Sometimes he was already up and quietly amusing himself. He was the best, most patient little guy, and he sure knew how to appreciate the dawn of a new day.
Nights I stayed up late crying in the shower so no one would hear me. I felt near collapse. One night I thought I was emotionally finished. Tears poured with water down my face. My midsection clenched and I felt dizzy. Struggling to breathe in the midst of a full blown panic attack, I got under the pounding water and started to relax. Strange as it seems, I suddenly realized something simple: The only way I could avoided this pain was never to have experienced Dexter at all. And honestly, I couldn’t imagine a world in which he had not touched my life; it was unthinkable.
I would let him go if I had to. I had already made the choices that had been mine to make. Dexter’s living or dying was not under my control. If he died, his life would continue to fill its noblest purpose. The child inspired love just by being who he was. I began to relax in this realization and in my new reality.
One afternoon Dexter and I sat together in a rocking chair near a window. The warmth of the sun fell on our faces and we drowsed off together. I held him almost flat against me, and I felt my own heart beating. Before nodding off, I wished I could give a part of my own heart’s strength to him.
Later my sister Nancy visited us and asked how his heart was. “Dexter’s actually looking really good,” she said. Nancy herself worked with developmentally disabled children, and had always been a support to me. “How does his heart sound?”
“I don’t know,” I said, and told her I’d hidden the stethoscope.
She asked if she could listen. After some searching, I found the stethoscope and steeled myself as she placed the bell against his wiggling chest. “Dexter, hold still,” she said.
“It sounds really good, Linda, listen.” I listened then and for the rest of the day. The heart sounded relentlessly rhythmic, and strong.
Within two days we were back at the doctor’s offices. After comparing the new tests with the ones taken a few weeks ago, he said, “All I can say is that perhaps once or twice in a career, a physician might see such a dramatic change in status. I don’t know if it is a miracle or not. But it’s a gift. Take it.”
Dexter lived with us a total of seven years. The day he left for “another Mother,” he was nearly normal size for a boy his age. His ability to use words to communicate was limited, and I don’t think he understood how “foster” mother is different than the “Mother” destined to care for and love him for the rest of his life. In any case, the last word he said to me was the first word I ever heard him say: “Mama.”
I tried to stay in touch, but in the world of foster parenthood, the effort isn’t always welcome or easy. There are boundaries in many cases that have to be respected.
About a year after Dexter left, I began a career and embarked on a very different life - one filled with travel and busyness in addition to the responsibilities of parenthood. In the following decades, I talked with others about the influence of Dexter upon my family’s life. I’d learned a lot about myself and others through him. I would sum it all up something like this: At the end of my life, if I have my wits about me, I will remember Dexter and the role he played as the child I could not have forever in my life, but who I was fortunate to have had at all. Thanks to him I learned one of the most important lessons: how to really be grateful for the moments that are there with those we love most. I am still refining that lesson, but he was my first teacher.
Today the life of little Matthew reminded me of all that. I am so sorry his parents, Sue and Ben, or any parent, have to go through so much. It’s small comfort under the circumstances, but in such awful struggles we become something that we weren’t before; and each example of love, revealed, is something the world needs. See what gifts the child Matthew has brought already, the memories he inspires...the good will his very existence has wrought.
Those sweet high school kids who pooled the money together to help their beloved teacher and his family…they too, are our future, a ray of hope in difficult times. Through one little child’s life, they knew they had a power for good, and they used it.