A couple of things are clear. Eventually, the U.S. Senate will vote on so-called health care reform. And it won’t be pretty. Maybe it won’t be as bad as we think, maybe they won’t cut 22 million people from the rolls. Or maybe it will be worse. I write a lot about Down syndrome, but this post is not about that (although really, it’s about every person — including Sophie — who has a pre-existing condition). Today my friend and long time Mothers Who Write workshop student Noan has given me permission to publish a post she shared on Facebook earlier this week. Take a look. Call or write your senator, if that’s your thing. Put names and faces and unforgettable stories out there. They need to be out there. As Noan wrote, “I told [the senators]  I thought the surest path towards understanding and compromise is to listen to each other’s stories. I asked them to please take the time to listen to mine.”

Here is hers. 

Bedtime

I would place the first three medications on a brightly colored plastic plate, then set the plate down on the couch in front of the TV and holler, “Elizabeth, come do your plate.” As she got older, I would frequently recite the purpose of these treatments. “First, do the Ventolin and the Advair to open up your airways. Next, the Flutter device to get you coughing. Coughing is good for you because it moves the mucus out of your airways. And always do TOBI (inhaled tobramycin) last. TOBI is an antibiotic- it fights infection – so you want to breathe it as deep into your lungs as possible.”

My youngest daughter, Elizabeth, has cystic fibrosis. Elizabeth was diagnosed with CF at the age of four months, so for as long as she can remember her bedtime routine has included a series of medical treatments. Every evening, while she and her sister watched their favorite TV shows, Elizabeth did her nightly breathing treatments. And while she was doing her breathing treatments, my husband or I would set up her feeding pump.

When she was eleven years old, Elizabeth had a g-tube (gastrostomy tube) placed into her stomach so she could do nighttime enteral tube feedings. She was tired of feeling tired, she was tired of not growing and as she told me at the time, she was tired of being “that skinny girl.” She had me glue decorative crystals onto her g-tube – the soft, plastic button protruding from her stomach. She wanted to look cute when she wore her bikini on the beach. And she did.

Once evening breathing treatments were done and she was hooked up to her feeding pump, Elizabeth would prick her finger and we would check her blood sugar levels. Then she would take the remaining medications I’d laid out on a napkin on the kitchen counter – a syringe filled with insulin (to treat cystic fibrosis related diabetes), Actigal (to treat CF-related liver disease), oral antibiotics (to treat on-going sinus and respiratory infections), a handful of digestive enzymes (to treat pancreatic insufficiency) and half a cup of magnesium citrate (to treat intestinal blockages).

When Elizabeth was healthy, these were the treatments she did. For her, they were as routine as brushing her teeth before bed. They were squeezed into a childhood filled with sleepovers and softball games, doctor appointments and hospitalizations, cello lessons and prom dates.

Elizabeth is 25 years old now and living in a distant city. I recently spoke with her on the phone. She was with a new boyfriend, visiting his family’s horse ranch. “So, you like this new boyfriend?” I asked.

Yes, she said.

Is he there right now?

Uh-huh.

Okay, so just say a number. On a scale of 1 to 10 – how much do you like him?

Nine, she said.

Before she hung up, I asked her what she remembers about bedtime in our house. We would always read, she said, and then you would tuck me in and you would say that cute rhyme: All tucked in and roasty toasty / Blow me a kiss good night / Close your eyes ‘til morning comes / Happy dreams and sleep tight.

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.