My friend and fellow reporter Rachel Calderon was nice enough to give us a visit. Her station, KOCO 5, aired her story today at 5 p.m. on her fundraising effort for The Children’s Hospital at OU Medical Center.
She gave us a mention!
That might draw a few new readers, so I thought I’d take it to the way back (or what seems now like the way back). The day I met my son. The day his life was threatened by a condition that hadn’t been detected. He could have died. But he lived.
Chopper nurses whisked him away. He flew to Children’s Hospital in Oklahoma City. Dr. David Tuggle gave him a gut surgery that saved his life after his small intestine swelled like a twisted balloon, packed with meconium that hadn’t budged like it was supposed to. Two surgeries and eight months later, we go to a Children’s clinic to monitor his chronic condition — cystic fibrosis. It’s a deadly disease, mainly because thick sticky mucus made by the body becomes problematic in the lungs. Lung infections take hold, kill tissue, and, slowly, rob a person of CF with the ability to breathe. Too many die young, and yet, there’s a lot of hope for this disease.
To support Rachel in her fundraising efforts, please visit this link. She will be dancing on Saturday in front of a whole bunch of people to help the hospital in its mission to bring high-quality doctors and surgeons to Children’s in Oklahoma City, like Dr. Tuggle, who retired in July.
My son may have a deadly disease but this is not the focus of our lives. My family tries hard to be happy with the time we have together every day. And no, Oprah did not tell me to say that. Fine, so what if she did?
This sums up our philosophy. It’s from my piece from The Oklahoman:
Everybody is born. Everybody dies. I was born and I became a writer and I’m on a deadline to finish this piece. We’re all on a deadline in life. Death is a certainty for everybody, not just my son. You. Me. The thing of it is, none of us know what that deadline is. My family had Eli and we made a decision together. We decided to enjoy the story as it is written and try hard not to try and guess the end. That would ruin the story.
Here is the column and story introducing our experience at Children’s and with Eli’s disease. It’s on NewsOK.com.
I said those words as my doctor handed me my baby boy, born Dec. 5.
My husband, Mark, and I fell in love with Eli the second we laid our eyes on him.
We did not know what was coming next.
We did not expect what was coming next.
We had 14 hours of perfection.
Something went wrong.
Eli’s tummy swelled. He threw up. Again and again.
No one could tell us why.
Nurses in jumpsuits whisked him away and put him on a helicopter. They placed him in a sterile contraption that looked like a giant, silver Easy Bake oven.
They handed him a blue fleece blanket the size of a pack of cards. He flew to another hospital. A surgeon there told me his condition was serious. They needed to operate.
“I don’t understand. You need to cut him open?”
Yes, to operate.
I fell apart.
I’ve since put myself back together.
My child’s life
Pure and innocent, few things are more perfect than a sweet newborn baby. Maybe that’s why it’s so terrifying, so heart wrenching, when it’s discovered something is wrong.
On Dec. 18, my husband and I learned Eli has cystic fibrosis (CF), a deadly genetic disease that, over time, steals away a person’s lung function.
People with cystic fibrosis have bodies that make thick, sticky mucus. There is nothing wrong with CF’ers’ brains. Outwardly, they’re just like you or me. Yet, the disease can impact every organ in the body. Most commonly, it disrupts lung function and digestion. Cystic fibrosis is deadly because over time it robs a person of the ability to breathe.
Eli was born to a family of scrappers. We are going to do everything we can to keep him healthy, and there are a lot of things you can do. It’s not the disease it once was. People are living into their 60s; the median age of survival is 38. That’s still much too young.
Still, in medicine, in life, nothing is certain.
Cystic fibrosis is a difficult reality to face.
We faced it 14 hours after he was born. Eli’s tummy swelled because the meconium — an infant’s first bowel movement — was thick and sticky. The first poo got stuck, the upper gut puffed up. It’s called meconium ileus and it’s a condition that can kill, has killed.
I’m a reporter in my professional world. When an ordeal hits — a homicide, a fire, someone else’s tragedy — I go there.
In the hospital, I faced an ordeal of my own.
I pretended to be tough. I tried to learn and understand, but this wasn’t a report. This was my child’s life.
I think I even told Eli’s surgeon, Dr. David Tuggle, something like, “Give it to me straight. I can handle it.”
That was a lie. I couldn’t.
The words cystic fibrosis, the very thought that my infant was born with a disease that kills, made me so lightheaded at first I almost passed out — several times. I could feel the color drain from my face. The world started to spin. My ears rang. I needed a chair, some water.
Tuggle saw right through me. He let me know what I needed to know then, in the moment. No more, no less.
I was in a fog, exhausted. The days in the neonatal intensive care unit ran together. I couldn’t keep doctors’ names straight, let alone the information they kept delivering.
It was hard for me to face the information, yet I didn’t want to forget any of it.
That’s why I started to write. To record. Words, pictures, video, sound. I haven’t been able to stop.
We’re not alone
My reasons for doing so are evolving. At first, I just needed the stress relief, and to document, so I could remember. It next became a great way to update family members and people who care about my family on Eli’s progress. He was in the hospital more than 30 days and required two major surgeries before he was 3 months old.
Eli’s first surgery separated his small intestine from his large intestine. Doctors flushed out his blocked small intestine. The ends of his little gut poked out of his tummy. They reminded me of red lifesavers, the two dots, connected by an incision scar. He pooed into an ileostomy bag affixed to his stomach. He wore two of these bags, one for each little gut end, for two months.
For two months, I wrote a lot about poo bags.
The prayers, the good vibes, were rolling in. The support gave us a boost at a difficult time.
As I continued to write, I heard from other moms who have children with cystic fibrosis. They’d been through something similar. Or, they were going through the exact same thing, right then. These mothers and fathers started following our story. Moms and dads with children who had other special needs also have started to tune in.
I figured that, maybe by writing, I could help more than those in my immediate family.
My family is new to Oklahoma. Like others coming to Oklahoma City, we were drawn by the sturdy economy, the chance for a better life. We are newcomers to the wind-swept plains.
It can be lonely to be the new kid in town.
Eli has opened up a world to us — a world with lots of interesting and wonderful people whose lives have been impacted by CF. They are raising money, pushing for a cure, together. Lives depend on it. That’s why CF’ers and those who love them are so driven. I think that’s what’s driving me to share so much, here, now, on these pages and my own blog. I want to help my son, but I want to help his community, too.
It’s a comfort to know you’re not alone when you face the unexpected. To you, the experience feels rare, exotic and terrifying. Then you discover a new world, one populated by others dealing with the exact same thing.
We form groups like this to find comfort. Circles of grief for the life we thought we’d get, then, didn’t. Our new groups don’t have to be dreary. There is humor there. Happiness. Support. Fellowship. Love. These are the things that make a harder life, the unexpected life, feel better than tolerable. Life can feel normal again. Life can feel good. Especially when you’re not alone.
Eli is just a little man, but he’s taught me a lot about life in his first five months here on earth.
I’m learning more about my son’s disease as he grows.
The most important thing I’ve learned is this: He is not his disease. Let me make that clear. He is a baby just like any other baby. He is a happy little man who likes being held, laughing, his sister Laila, his daddy and trying to scoot, these days. He loves his mama. Me.
I love Eli. He is perfect.