“Sixty-five roses” is what children call the terminal illness because “cystic fibrosis” is too difficult to say.
The little girl on the card looked like how I imagine my baby would at this age — big curls, storybook features, inquisitive eyes. It was just an illustration. Not a real child. I hadn’t cried since we were first admitted to the hospital. But something about this cheesy cartoon child gave me permission to fall apart.
At 4 months old, my daughter, Adelaide, weighed less than eight pounds, and her skin was the color of a child in a Victorian portrait. Everyone told us how beautiful she was — a perfect porcelain doll.
As it turned out, that porcelain hue was severe anemia. Her blood work was off the charts abnormal. Something was terribly wrong.
Our first pediatrician assumed I wasn’t feeding her enough. He was of the blame-the-mother philosophy. I explained she was nursing all day. The problem was not with supply. It was all going in, but nothing stayed in. It reminded me of that silly children’s song, “There’s a hole in the bucket, dear Liza, dear Liza / There’s a hole in the bucket, dear Liza, a hole.”
Nothing remained in her body long enough to actually absorb. A hole in the bucket. Dear Liza, a hole.
We left our blame-the-mom doc and took Adelaide to a pediatrician who was known to be the best diagnostician in Santa Monica, California. He took one look at Addie and cancelled all of his afternoon appointments. No blame, no brush off — a real doctor.
He sent us upstairs to a lactation consultant, who after two seconds of hearing my baby suckle said, “A blind person could see that baby is getting enough to eat.”
They took more blood, urine, stool. They poked and prodded and still weren’t sure why she was failing to thrive. We were referred to a gastroenterologist. “But before you go,” the doctor said, “Let’s rule out Cystic Fibrosis. It’s probably not that, but let’s rule out the bad stuff first.”
He made an appointment for us. This was suddenly real. There was bad stuff we were ruling out.
The second I got home I hopped on the internet and looked up the disease they thought my daughter probably didn’t have. Cystic Fibrosis. Isn’t that the foundation that sends me monthly letters with sad stories of children dying? I’d even seen a Movie of the Week in the 1980’s about a little girl whose parents had to hold her upside down and beat her vigorously on the back to dislodge the mucous and blood from her lungs. Her father was the famed sports writer, Frank Deford, and his daughter died when she was only 9. It was one of those conditions where you thank God you don’t have it or know anyone else who does.
But this was the worse-case scenario. The doctor didn’t appear concerned. We were just ruling it out. Just crossing it off our list of “awful things.”
Maybe she had an allergy or blockage — some correctable disorder where, at worst, she may have to take a pill every day or have minor surgery or a special diet. It wasn’t going to be this – – this disease that’s so horrible, the children who have it can’t even call it by its real name.
When I scrolled down to “symptoms,” the breath left my body. Salty skin, failure to thrive, anemia. They were describing my baby. My sweet, napping, salty baby, who had no idea her mother’s heart was being ripped from her body. The median age of survival was 37, but most didn’t live to adulthood.
The doctor didn’t think it was likely, but I knew this was it. This 80’s Movie of the Week terminal illness with a name so ugly they have to cover it with flowers.
A sweat test confirmed it. Adelaide had Sixty Five Roses.
My daughter turned 9 a few days ago. With respiratory therapy, a bazillion meds and anal retentive parenting, she’s thriving. She’s a swimmer, a surfer and a Girl Scout. That’s not to say Cystic Fibrosis is a bed of roses. Her treatments steal hours out of her day, she has chronic stomach aches and we deal with the real fear that this is still a fatal illness. She’s been poked and prodded and has had more procedures than my 96-year-old grandmother. But she’s here. And she’s funny and so full of life that people do a double take when I tell them she has CF.
When I was 18, I began making donations to the Cystic Fibrosis Foundation, ten years before my daughter was born. And on the day she was released from the hospital, when I couldn’t believe we were coming home to this life, I received a “thank you” from the foundation I had no idea would one day become my family.
Today in an antique store I found an embroidered picture of the little girl — the one with the roses, curly hair and inquisitive eyes. But this time I didn’t break down. After nine years of living life, rather than a diagnosis, I saw a brave little girl looking deep into a bouquet, searching for beauty in a word that’s still too difficult to say.
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