The first thing I noticed about Alyssa Siler, lovely person, were her fashionable lenses. We chatted about where she got them (online, free deal, unfortunately over), and how I’d love to find some in a similar style. I added that my girl at my regular Starbucks has this somewhat stunning rotation of fashionable glasses going and said she gets them online, for something like $20. I dug the name of the online store (Zenni…something) out of my memory and Alyssa made a note of that.
That’s how we broke the ice, and that’s what we talked about first because that’s how women like to talk. We both like fashion and it’s an easy topic, but we were really there because we have something else in common. We each have a child living with a chronic, deadly disease.
Living with a chronic, deadly disease.
Alyssa and her family made a choice to let living outweigh the chronic, deadly disease part of that phrase, like this:
with a chronic, deadly disease.
We met at Starbucks in a busy strip mall off of a main thoroughfare in northwest Oklahoma City. We met there because I had Eli and made this impulsive decision one day to write about it, because I was upset, really upset, because something was wrong with my newborn son and I didn’t know what else to do. Then people shared my words and this person knew that person who knew Alyssa. I got a FB message with her phone number. I called. Through the powers of social media and the universe, we converged at a Starbucks. We swapped stories.
Like Eli, her daughter was born with a blocked bowel, a condition called meconium ileus. This was not detected before her daughter, Hayden, was born six years ago.
Alyssa had her baby and what happened next was not supposed to happen. Her baby did not cry. She only grunted, and her tummy was bloated. Hospital staff whisked Hayden away at a hospital that did not have a neonatal intensive care unit.
Alyssa, stuck at the hospital where she delivered, would not see her baby again for a full day. Hayden’s first day in the world brought both joy and the almost indescribable fear parents face when something goes wrong with a helpless newborn. That’s also how we felt, six years later, in the hospital after we had Eli.
Hayden had emergency surgery on her gut at Integris Baptist Medical Center in Oklahoma City shortly after she was born. Baby H had to have eight inches of her gut taken out, and then have the ends put together again. She was in the NICU for 14 days. Unlike Eli, Hayden didn’t need poo bags, since the surgery took care of a gut removal, clearing out and rebuild in one shot. Our buddy had two surgeries: one to take apart and clear out the gut, one to put it back together again. He didn’t have go have any intestine removed.
What’s happened since Hayden was born and since the surgery is that she has become an artist, and athlete, a kindergarten student, a happy little girl. She is a lot of things. She is not a disease, a diagnosis, a set of lungs to be fretted over. Yes, she has had infections and takes breathing treatments via inhalers. She wears a vest every day to shake up her lungs. Her treatments have to start every night at 6:30 p.m. to make her bedtime. The downside is that Hayden has little-to-no unscheduled “Hayden time,” and she is old enough where that really bothers her. Alyssa feels bad about that. Parents have to be strict with treatments, because those treatments keep children with cystic fibrosis as healthy as possible. Hayden gets to skip them on Christmas and her birthday.
When Dr. Royall first told me a child with cystic fibrosis eventually requires about two hours of care a day, every day, for life, my reaction, as it was to every piece of news in those early days, was to weep.
As I’ve said before, now that things have calmed down, I can see now how you just make the care fit into your life. Is it ideal? No. It just works if you make it work, and you will make it work if you want to keep your child well.
Alyssa’s family includes her husband, Ryan. When Hayden was 4 they decided to have another child.
With each of them carrying the CF gene like Mark and I do, Alyssa and Ryan’s chances of having a second baby with the disease were one in four. Initially, they had Hayden, and thought she’d be an only child.
Alyssa is an only child. When her father died suddenly a few years back, she felt alone. She thought it would be easier to weather a loss like that with a sibling. She thought it was selfish not to give Hayden a little buddy.
Due to the risks involved with genetic testing during pregnancy, Alyssa and her husband decided not to test for CF with their second pregnancy.
I wondered how she felt while she was carrying her second child, if the pregnancy was a nail-biter, if she was stressed.
No, she was totally at peace, she said. Whatever would be would be, and if he had CF, they at least would know how to take care of him. Ian had a sweat test after birth that came back negative for cystic fibrosis.
He’s 18 months old now.
Alyssa’s reaction to her daughter’s diagnosis was different than mine to my son’s in one big way. Immediately, she wanted to research, to know more, to know everything, about the disease. Right away, she geared up for a fight. She called up the local chapter of the Cystic Fibrosis Foundation when Hayden was two weeks old and asked, “What can I do?”
I’ve only just begun to understand CF, because only recently have I been able to emotionally handle the research. I’m getting there, however slowly, and I’m not trying to rush.
But despite our different paces on the path to understanding, Alyssa and I agree in a big way on this point: Knowledge is power.
Alyssa is one of those lovely people that makes you feel a little high on life. Also, I have to mention, she happens to be a beauty queen. She entered the Mrs. Oklahoma pageant a few years back because she saw it as a platform to spread awareness about cystic fibrosis. Her father died four days before the contest. She pushed forward, won, and that’s what she’s done.
Due to her family’s involvement in the Sooner Branch of the Cystic Fibrosis Foundation, $750,000 has been raised in the fight against cystic fibrosis. In the last few years, scientists have made major breakthroughs in the treatment of the disease, and more are on the horizon. Private funding is key because it’s a relatively rare disease that impacts 30,000 people in the US. Drug companies aren’t willing to risk millions looking for a cure. That’s where the nonprofit comes in.
I’d like to get involved with the local chapter of the CF Foundation. To what extent, I’m not sure, but it’s something I’d like to explore. It feels great to meet people like Alyssa, not just because she’s a lovely person, but because she and her family are on a journey like me and my family. They are farther ahead and have learned a lot of things. And they are nice so they want to share what they’ve learned, to help.
Along the lines of getting involved, Alyssa warned me, it is rewarding but it can be heartbreaking, too. The more you get involved, the closer you are to the reality of the disease. This disease kills people. A young woman received an award one year at a charity event. The next year, her parents accepted another award on their daughter’s behalf. Their child had gotten sick. She had died.
We’ve set up a lunch with the ladies who run the local chapter.
Fighting this disease is going to be painful at times, but I’m willing to bear it because I love my son and pushing for a cure could help save his life.
My family, like Alyssa’s, is living with a chronic, deadly disease.
Living with a chronic, deadly disease, learning that the emphasis has to be on living.