Write Your Own History

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“She believes it, and so do I. That’s enough.”

Photo by Chris Glenn

“Olivia is a true miracle child. At birth, she weighed only 1 pound, 4 ounces and was given less than a 5% chance of survival. From head to toe, she was just 12 inches long. According to our doctors, she was in the .5 percent size range of kids her age. As far as they know, she’s the smallest child ever born in the state of Indiana to survive. In 23 years working, the doctor who delivered her said he had had never seen a baby cry who was born under those circumstances. Even then, she had sass.

Photos by Chris Glenn

When Olivia first got to come home six months later, she had a variety of diagnoses including cerebral palsy, chronic lung disease, and patent ductus arteriosus (PDA) — a congenital heart defect. Then, six months after that, she started having seizures, which led to a diagnosis of Lynnox-Gastaut Syndrome – essentially meaning you have epilepsy that can’t be controlled by medication. If that wasn’t enough, just over half a year ago we got another gut punch with a diagnosis known as PBS (Pilarowski-Bjornsson Syndrome) – leading to another life expectancy estimation of 6-9 months. In literature, there are only 10 people in the whole world that have had this diagnosis, and none of them have survived more than a couple of years.

Looking at her today, I know the first thing people think. Everyone can tell she’s sick, especially after she lost her hair. We actually never cut it; she had beautiful hair almost as long a she was. But after you just talk with her for a minute, watch her interact with the world, you remember that she’s still just a little kid. No matter what is going on in her life, she hasn’t changed. She wants to be Elsa when she grows up. She’ll be the first kid to dive into a fresh pile of mulch, no matter what she’s wearing. She gets to be a cheerleader once a week and even got “dancer of the year” at her recital for her strength and courage. Yes, she got a raw deal in this life, but she doesn’t know that. Of course, she knows she’s sick, but at the same time, she doesn’t know anything different. It is her life, and she’s committed to making it her own.

Olivia’s pulmonologist once told me something I’ll never forget: “She writes her own history.” I’ve come to truly believe this. This is why we haven’t had a conversation yet about what the future might hold. We don’t want her to be defined by some predetermined fate. Olivia defines her destiny. We want her to write her story.

I think she’s internalized this, too, even if I haven’t told her to. There’s no doubt about it, she’s bossy. She’s in charge. When she’s at the hospital, she calls the doctors “assholes.” Don’t get us wrong, we have wonderful doctors. But at the same time, the doctors are not God. They don’t know everything. When Olivia was born, they recommended that I give birth and let her die on my chest. It’s good to listen to them, but Olivia knows implicitly her life is hers. No matter what, she’s in control.

Olivia actually handles it better than I do sometimes. There are times where I just have to cry to get it all out somehow. After the PBS diagnosis, I actually had to look at her and say, “Okay, Mommy needs to pull into the gas station for a minute.” I went into the bathroom, had my cry, and then walked out. And there were other hard times where I would lay next to her as she slept, holding her hand just to make sure she still had a heartbeat.

In these times, a little kindness can go a long way. People forget this. I remember in the hospital one night a nurse sat a Mountain Dew on the nightstand for me. Another nurse once put Olivia’s hair (when she had some) into pigtails for her. One day after coming home from the hospital we discovered someone had cleaned our house for us. There’s an older lady I know who sends Olivia and her little sister Everly a card in the mail every three months, complete with little stickers. Not too long ago a kind soul left us a couple bottles of wine on our doorstep. I will always remember these little things. There’s still good in the world.

I hope people remember Olivia too. I hope — no, I know — she makes a difference in the lives she touches. Everyone she meets, it seems, ends up wrapped around her little finger. Even when she was born, she was making a difference; the hospital we were in happened to be a teaching hospital, and I remember all the students watching us because there were so few babies born at 23 weeks. She has put people on their knees before that have never been on their knees for anyone. I even have a picture of her with an outlaw motorcycle club that fell in love with her. She’s changed lives.

Lord knows she’s changed mine. She’s taught me strength. She’s taught me grace. She’s taught me how to keep faith. I always had faith, but I remember the nights when I was standing by the incubator asking God why. Seeing how she goes into each new day just knowing it’s going to be better than the day before, she’s changed me. She’s changed all of us.

Photos by Chris Glenn

I know the odds. Only ten people in the world have ever experienced what Olivia is going through and none of them are still with us. But I don’t want to hear she is going to leave us. The day she tells us she’s ready we’ll have that conversation, but today I want her to live. I want to let her be a kid. I want her to know how much she’s loved, to enjoy today, to look forward to tomorrow, and to never, ever give up.

This year it’s just going to be us for the holidays. Because of COVID-19 we can’t really risk much more than that. But even still, we’re going to get to see the magic in her eyes one more year. Blessings like that make me believe that she’s going to be the one in 10. She believes it, and so do I. That’s enough.”

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