A decade ago, my wife and I saw our entire lives change in a moment when our oldest son was diagnosed with brain cancer.
That moment, of course, was a series of events. First, a checkup at the pediatrician’s office that ended with our doctor raising some concerns. Then the ultrasound the next day that ended with the doctor telling us to drive to the local children’s hospital, without stopping. There was a team of doctors and nurses waiting for us, he said.
Then there was the first MRI which showed the extent of the tumor. When they sat us down to tell us, we learned how bad it was.
It was bad.
The moments picked up speed. The number of scans and surgeries started to grow at an alarming rate, and before we knew it, we had been admitted to St. Jude Children’s Research Hospital and they were hooking up the first round of chemotherapy.
At the other end of that bag was our six month old.
After that first round, the moments came so fast that even now, ten years later, I can’t quite pull them apart from one another. Chemo, blood draws, pneumonia. MRIs, feeding tubes, seizures. Rinse, wash, repeat.
It was bad.
But it wasn’t all bad.
In that season, we were surrounded by friends and families who cared for us, and not just in the handywavy fashion of tweets about thoughts and prayers. We were carried through these moments by members of our church who did our laundry, cleaned our apartment, paid for our groceries and more. They sat with us, cried with us, prayed with us and shared in our deepest days and darkest nights. It was life together, despite the messiness and pain we brought into the community.
Eventually the moments slowed down. Josiah completed his last round of chemo and our daughter Allison was born. We had been into the arena and came out alive, but heavily scarred. The marks on his scalp were ever-present reminders of the damage done to each of us.
When he came off treatment and we were thrust back into everyday life, the wheels came off for me. The trauma hit me all at once, but thanks to my pastors, friends and an incredible therapist, I’m still here today.
The years since have been marked with ups and downs. The truly scary moments have become less frequent over time, slowly fading away as joyous moments have become brighter. Kindergarten graduations, church musicals, good MRIs. Learning to walk, learning to run, learning to ride a bike. Rinse, wash, repeat.
Josiah is not out of the woods, but the challenges have changed as he’s grown. Seizures and other echos of his past continue to be obstacles, but celebrating ten years with his diagnosis is a true gift.
Not every family with a sick kid get to celebrate this milestone. We have friends who are burying their child this week after a years-long battle with a catastrophic disease. The contrast is blinding, and the survivor’s guilt is heavy. Being around so many of our friends this week to honor this family has been hard, but so many of our conversations have been full of thankfulness for Josiah’s wellbeing. It’s humbling that so many people care so much, even ten years into this battle.
I don’t know what the future holds. I don’t know why kids get sick, or what we’re supposed to do when they die, but I have come to believe that all things can be used for good, and for the benefit of those still here. I see that in the lives of every sick kid I have ever met, regardless of how their story ends.
It would be a lie for me to say that I am thankful for the last ten years, but I am stronger for living through them, and hopefully, a better person, husband and father.
