“It’s a choice. It’s easy to wake up and be sad, discouraged… but that won’t do anything for anyone. It won’t cure our son. We choose joy. That’s our path.”
Tripp’s mom, Jessica, leaves us stunned and silent. In our conference room, you could hear a pin drop. She goes on, talking about her son’s journey, and how much of a roller coaster the last three years have been. The courage in her voice, the unshakable confidence, is not what we expected after reading her son’s application. In fact, it was the last thing we had expected. But the thing about the Nichols family, we were soon to find out, is that they make a habit of shattering expectations.
After Nick and Jessica got married, they couldn’t wait to start a family. When the excited newlyweds welcomed Tripp on May 7, 2012, it was love at first sight. They took home their bundle of joy who “appeared to be typical in every way.” The next few months they watched in awe as their son met all of his milestones on time. He learned to sit up, roll over, and hold his bottle.
Until one Friday night, when all of his progress came to a crashing halt. Tripp was playing with his grandma on the floor when he started to crunch forward, lifting his head off the ground and contracting towards his knees. Alarmed, his grandma picked him up but he continued to do it. The color drained from her face. Tripp wasn’t moving voluntarily. He was having a seizure.
And just like that, the Nichols’ life changed forever. The few months of careless adoration of their perfectly healthy baby boy were over. The time they were entering was a period of constant fear, confusion, and darkness. What ensued was a whirlwind: rushing to the ER terrified that they were losing their son, being admitted to the Children’s Hospital, doctors testing their four month old, hooking up wires to him, running EEGs and MRIs.
The symptoms spiraled: he wasn’t tracking things with his eyes and doctors thought he lost his sight, he lost his movement, his functions. Tripp was regressing so rapidly his parents’ heads were spinning. The events blurred together. It was all moving so fast. Just weeks before Tripp had been perfectly healthy, and now they were hearing the words “catastrophic epilepsy” and “Infantile Spasms.”
Unfortunately, the bad news had just begun. “Children like Tripp don’t live long, productive lives,” the doctor began. “In fact, they don’t live long at all. Keep him home and love on him because he probably won’t see his first birthday.” This news knocked Jessica and Nick to their feet. They cried all night, they prayed, they mourned the life they had originally wanted for their son. But – the doctor made one giant error. He delivered this sentence without knowing who he was talking to. He had no idea. This was not the family that was going to take their baby home to die. This family was going to pull themselves up and start finding creative solutions to this problem, do something rather than nothing.
This was a family of fighters. And they were about to discover the community that roots for the underdog.
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