I’m not sure which time it happened — whether it was on the occasion of Sophie’s first open heart surgery, when she was four months old, or the second, when she was four years old. We were ushered into a tiny exam room at Phoenix Childrens Hospital — a pre-surgery check, it’s where they put your baby in a gown and give you some time alone with her before they saw her chest open — and the image above was hanging on the wall. I lost it.

The hospital is filled with bright art, created by local artists and children. It’s lovely, but this image took my breath away – because of the content, obviously, but also the artist. I knew instantly whose work it was.

Rose Johnson was a favorite of mine from the early 1990s, when I arrived home in Phoenix, looking for something bright to focus on. She illustrated stories for the paper and I went to all of her shows. I didn’t know her well but when Ray and I were married, I hired her to do some details for our wedding program. On her own, she drove up to the spot we had the ceremony and sketched details of the Royal Palms hotel. She also did woodcut-esque drawings of both Izzy the cat and Rosy the dog, which we included on the program. And a beautiful image with our names — including cactus for Ray and roses for me. I had that made into a stamp and went crazy with it. I got the stamp out to show you — here’s a not very good example:

Rose moved to Bisbee a long while ago, and for years I’d get occasional postcards when she’d have a show, and I think she still did work for New Times from time to time. She was off the radar, but came back on it suddenly at the end of May, when it was learned she’d passed away in Bali after drinking tainted rice wine. She was just 48.

You can read all about Rose and her art and what happened (or might have happened) in Bali in a terrific cover story we ran this week by Kathleen Vanesian. What amazed me about her passing is the patchwork of people I know who knew and loved Rose that emerged — largely thanks to Facebook — and taught me yet again what a small town Phoenix is.  

I always meant to write to Rose and tell her about finding her image with the nurse and the heart, but I never did. I’d like to say I think that somehow she knew anyhow, but that’s too hokey even for me, so I’ll have to leave this with some strings untied….

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.