“If you spend every day thinking about what could go wrong, the day is gone”
“The name Caleb, I found out later, has a meaning in Hebrew: “wholehearted.” At the time, I had no idea how fitting this name would be.
Born prematurely at 29 weeks with his twin sister, Claire, it was clear that something was wrong early when he didn’t want to breathe. It was Claire we were all worried about during pregnancy, but while she came into the world crying like a little lamb, her brother stayed silent.
Even after he was discharged to come home after a difficult stay in the NICU — a stay that included one resuscitation — Caleb needed to be hooked up to a monitor that would wake me up if his breathing or heart rate ever dropped to dangerous levels. It went off so often I thought it was defective and called the manufacturer for a replacement, but when the new monitor did the same, I listened to his heart on my own with a stethoscope. I didn’t really know what I was listening to, but I knew immediately it wasn’t normal.
At three months old the local children’s hospital found out what was wrong after running a chest x-ray. Caleb’s poor heart was extremely large, and as a result, was not formed correctly. The doctor said there were three things that could happen from there: he may not survive at all, he may be able to be stabilized long enough to receive a transplant, or he may be able to stabilize long-term with the help of medications.
Fortunately, the third option was what came to pass, but there were more challenges to come. As we watched his sister meet all of her developmental milestones one after another, it was clear that Caleb was falling further behind. At three years old he was put on a CPAP machine, a year later a BiPAP machine, then a trilogy ventilator, and then just last June he was admitted to a neurological Intensive care unit for a decline in cognitive skills. The doctors couldn’t pinpoint exactly what was wrong other than it was genetic and likely tied to his heart, but what was clear, was that it was progressive. Even things he used to be able to do like writing his ABC were vanishing right before our eyes.
And if that wasn’t enough, when he was born, Caleb was diagnosed with a Cytomegalovirus (CMV) virus, which could lead to any number of disabilities. Kiddos with CMV have a high chance of losing their hearing, for example, or developing any number of neuromuscular diseases. Caleb sometimes was like a limp noodle — I could pick him up sometimes and his head would just flop back, unable to hold itself up.
Caleb is a child who, through his entire life, hasn’t had anything go his way — but with therapy and sheer force of will, he has defied every single odd he was ever given. Despite the fact that when he tires, his breathing muscles are the first things to fade, my boy is an adrenaline junkie. If it goes fast, he wants to be on it. If it is high, he will want to jump off it. He loves camping and hiking trails — and when he can’t hike anymore he loves riding on my back to the top of the mountains. He just learned how to ride a bike, and with the help of a special vest to stabilize his trunk movements, he’s learning how to ride a horse. When a doctor tells him he probably won’t be able to do something, he finds a way. He is proof that a diagnosis doesn’t define you.
In fact, his determination followed through with our decision to visit Give Kids The World. He was ready. He watched YouTube videos about the Give Kids The World experience and Disney World, and the day before leaving, I came home after work to find our bags pre-packed waiting for me in the driveway.
The entire stay here, he has been in charge. We’re on his schedule. Life for him has always been about what he has to do next – so, it’s been a dream come true to see him not worry about what he needs to do, but what he wants to do. He picked the window seat on his first plane ride, he danced with the other kids at the Give Kids The World parties, he wanted to ride Splash Mountain and get soaked. These are things he will remember forever.
His will is so strong, it has rubbed off on everyone he’s touched. He has brought our family closer than ever before, especially my sister Melanie, who I can count on for anything; while we used to be isolated in our own areas, we now live within five miles of each other to be a support system. Caleb’s heart condition, in fact, was diagnosed the day Melanie’s daughter was born, so we’ve always felt linked in that way.
In the beginning I know it was hard on Claire and my other two girls, Kassie and Alayna, because there just wasn’t enough of me available to give them equal attention, but they have all grown up so much. They can do things no other kids their age can do. They can turn on a ventilator, they can find help when needed — I am so proud of them for the people they’ve become.
If I could give advice to any family that might go through something like what we have, I would tell them to remember not to spend so long looking at what could happen. If you spend every day thinking about what could go wrong, the day is gone. Remember kids are so strong. They can persevere. They can be your strength when you feel you have none.
Caleb may have been born with broken heart, but it also couldn’t be more whole.”