It’s the tentative days of spring here in New England, and tulips are shouldering their way through the soil in my garden, and promising color. Passover and Easter are coming, the season of passage and transformation and identity. And a couple of towns over from where we live a young woman is pulling on her sneakers for yet another long training run.
Yes, it’s marathon time again, and this year is the third year that our family is participating in Boston Children’s Hospital’s Miles for Miracles marathon program. In the past two years, my son has been the patient partnered first with his grandfather, and then with the dueling duo of his grandfather and great-uncle. This year, these two veteran atheletes have elected to hang up their sneakers, passing the torch to Jennifer Quinby, the daughter of a Children’s social worker, herself a Children’s Hospital employee. Jenn, like my father and uncle before her, is raising money for the hospital, money that will fund needs such as groundbreaking, life-saving research, as well as the toys and crayons given to sick, grumpy kids, or the tutors who keep children on track during long hospital stays. Her run is an acknowledgement and gesture of support to Children’s Hospital, an institution that is a treasure, a place that offers top-notch care to anyone who turns up, whether they can afford to pay for it or not.
But my perspective is perhaps a bit myopic. Children’s Hospital has saved my child's life twice, once when he was eight days old and then again on 9/11/2004. As a parent, I only ever expected to be given my child’s life once, when he was born. It is a shattering thing to have happen again, first when he was an tiny baby and we uncertain new parents, and again when he was nearly three years old. Aware of the shock that can come with a diagnosis or trauma, the hematology and immunology teams worked with my husband and myself, giving us the tools with which to protect our son without stifling him, but instead to create an environment in which he will flourish and wreak happy havok. And an environment in whch we, his parents, are competent advocates and caregivers – a role which I find is tested on a regular basis.
The blessing of Boston is that it is full of medical facilities, including a smaller community hospital not five minutes from our home. But the community hospitals are not prepared for cases like ours, for the complications and the specific knowledge that comes with a child with severe hemophilia and multiple allergies. The saying in the medical community is that, when you hear hoofbeats, look for horses – not zebras. Well, we are a zebra, and the hematologists like to tell me that we are a zebra who teaches them something new, at least a couple of times per year.
Oy. Lightening must have struck when this kid was conceived: his hemophilia makes him one in ten thousand, according to the statistics, and one of 8% of American children managing dangerous allergies. And his combination of the two, along with his personal quirks on his diagnoses make him, well, unique. But at Children’s Hospital, he’s just another kid, laughing in the play-room. And thanks to Children’s Hospital and the support they’ve given us, when he goes home or to school, he’s just another child, running and climbing and generally getting into trouble.
My uncle, last year, described his experience running the marathon. He said that as he ran, he passed a little girl who pointed at his Miles for Miracles jersey and shrieked, ‘Children’s Hospital?? They fixed my heart!’ As he ran, he thought about the children for whom he was running, and his nephew, for whom the day begins with a needle and continues with a watchful eye, guarding his safety while also guarding his freedom. My nephew, wrote the uncle, also runs his marathon. But he runs his race daily, balancing medical need with the right to a childhood that is marked by joy, rather than by diagnoses.
Nobody wants or expects to be a zebra. Certainly my husband and I never envisioned this complicated life for our child. We are grateful that, having produced our loving, chatty little guy, there is a place where he can be cared for and nourished in times of need. It is this sense of security that permeates our relationship with Boston Children’s and our parenting, allowing us to build a world that is exactly the right kind of ‘normal’ for him. So, whether you are the parent of horse or zebra, or simply friend and family, we invite you to join us in supporting this remarkable institution. And think of Jenn on Patriot’s Day!
1. click on this link Miles for Miracles
2. on the right side of the page, choose to sponsor a runner (or patient).
3. Type ‘Jennifer Quinby’ in for the runner’s name.