I wanted to write about the science fair today, or maybe how I’m mad at the PTA, but I figure it’s best to get all the really sad stuff off my chest now.
The bad pun’s intended, sort of. These days, it’s all about lungs.
For a while, in our house, it was all about hearts. Sophie had heart surgery twice before she was five. I’m not a religious person, but I looked for messages. The morning of the first surgery, when Sophie was four months old, they put us in an exam room — more like a holding cell — in the surgery prep area at Phoenix Childrens Hospital.
Did you know there’s an entire industry devoted to signage and design in hospitals, and, particularly at childrens hospitals, art? I walked into that tiny room and there on the wall was a drawing of a little girl holding a big, bright red heart.
The tears I’d fought back all morning welled up. I knew who the artist was before I looked: a woman named Rose Johnson, whose work for New Times I liked so much I commissioned her to do the artwork for our wedding program.
It was a sign. So what do the events of the last year mean?
Last May, my dear friend Cheryl broke the news that her longtime companion was in the final stages of lung cancer. In June, my mother-in-law received a similar diagnosis. In August, my grandfather drew his last breath — days later than he should have, because someone had turned the oxygen up too high for a 94-year-old man who was supposed be in hospice.
And in January, Jordan Sterling died. Growing up, I always sort of knew who the Sterlings were — the kids were a little younger, went to different schools, but our moms took ballet together (really) and we had mutual friends. Phoenix is not a large place, at least it wasn’t back then.
When I moved home, I worked for years with Jordan’s stepmother, Terry Greene Sterling, now a very close friend and mentor. So I heard a lot more about the Sterlings. Mostly, I have to admit, about their health. At my wedding, Terry wore a bright red suit and read a lovely, funny piece she’d written about how Ray and I met. (She introduced us.) Then she had to rush off; Jordan was in the hospital again.
There are three Sterling kids. Two were born with cystic fibrosis. I’m honestly not sure how vigilant the testing is these days for the genes that match up and give it to your baby. Thirtysome years ago, I think it was non-existent. So the Sterlings had no idea, til all three kids were born (the eldest is the one who doesn’t have it) that two had it.
Cystic fibrosis is a death sentence. The fact that Brooke and Jordan made it to their mid-30s is a testament to medical science, their families and their own incredible strength. The two took different paths, which I find fascinating. (You can read my friend and former colleague Megan Irwin’s story about the family here: http://www.phoenixnewtimes.com/2006-08-10/news/borrowed-time/)
Despite their disease, both Brooke and Jordan have had amazing lives, filled with friends and adventure, but also focused a lot on health. Brooke is all about the natural — she runs a yoga studio, sees a naturopath, worships her body. Jordan took the medical route: he had a double lung transplant years ago. For a while, it worked. But the anti-rejection drugs shot his kidneys and I don’t more detail than that other than the guy had something like 15 hospitalizations in a year. He died still hoping for a lung/kidney transplant.
At the funeral, I couldn’t look at his mother.
The night Jordan died, Terry left me a voicemail I heard right before bed, and as I tried to go sleep, I couldn’t get the thought out of my head: How could you live with yourself, knowing you’d brought this child — these two children — into the world with this horrible disease that would ultimately, quite literally, smother them?
And then, like a flash of lightning (really, I know it sounds dramatic, but that’s what it was like) I thought, “SOPHIE.”
My — our — situation isn’t so different.
No, Sophie does not have cystic fibrosis. And yes, I know, I’m opening myself up for attack, for daring to question the decision to bring a baby with Down syndrome into the world.
But this is not about her brain. So often, people think that’s all it’s about. What I’m thinking about is her heart. We were so lucky the doctors were able to fix it — twice. There could be a third time. And what about the other risks? Sophie was home the past two days with a fever, and I can’t say I didn’t stare at her yesterday and wonder, “Leukemia?”
(She’s fine today.)
A lot of days I stop and ask myself, “What if I brought this amazing little person into the world and she dies an early, painful death because of my decision (or lack thereof)?”
How could I live with myself?
But really, I think, the bigger question is this: How can anyone ever have a baby and live with all the potential consequencesthat will follow that person around his or her entire life?
Maybe it’s best to take a deep breath and focus on something else, like being mad at the PTA.