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.