There is a beautiful tension with what we get to do. It’s a weight, one I can’t properly explain but I’ll try.
Walking alongside our courageous kids and their families is a gift. I know we all feel immensely blessed to be able to do what we do. You encourage, love, and fight with each family. We have the honor of being welcomed in and trusted by so many families during their toughest season. All we want is to love, to be there and show every family how important they are and how they’ll never walk alone.
We have opportunities to celebrate. To celebrate clear scans, good blood counts, tumor shrinkage, NED titles, and skills learned in PT after surgeries like learning to walk again or read. I see how important celebrating life is though these moments. We’ve even come to embrace “celebrate” as one of our core values.
But there is another side to the road we walk. The moments that hit you like a ton of bricks. The texts, Facebook posts, and phone calls that empty your stomach. The moments following questions like:
“have you heard?”
“did so and so tell you?”
I’m talking about the reality of childhood cancer. The hearing just this morning that Devin joined Jessie.
This morning was one of those brutal moments for me. Where chills cover your body and the pit forms in your stomach. A moment that leaves you speechless and emotionless; one you have to process.
Processing is hard but necessary. I was in the office this morning when I learned of our little warrior Devin Suau joining Jessie. He was fighting exactly what she fought: DIPG. It’s a monster. And just one month ago, I was standing in Boston, before a New England Revolution soccer game Devin was going to be at, but couldn’t because radiation hit him so hard. So instead, I watched three little boys, Devin’s brothers, smile with excitement as they ran around a suite at Gillette Stadium seeing everything put together for them, so they could feel special.
And there was one moment I will never forget Devin’s father face-timed his youngest son, at home with his wife, and told Devin all about the support there for him. How much he wished Devin could be there. He walked the phone around the suite, showing Devin the view of the field, the giant gift bag filled with green items galore, and the all-green JoyJar we made for him. Each of the brothers would pop into the call too, one taking the phone to show Devin their favorite things, another being silly with green sunglasses. They would all express how much they wanted Devin to be there, and how they couldn’t wait to come home and give Devin his gifts. After the call, Devin’s dad just stood there, looking out on the field. I could tell he didn’t want to cry, didn’t want to show his pain, but his body language was of a father who wants nothing more than his son to make it – to be the exception.
It was probably an hour after hearing Devin joined Jess, when it finally hit me, the weight of this tension, a beautiful tension.
I got in my car to drive home and I started crying. I cried for Devin. I cried for his family and the road they now have to navigate. I cried for Jessie. I was taken back immediately to Thursday, January 5th, 2012 and the last moments I‘ll have with her.
It’s a beautiful gift getting to love other families because of the selfless love and compassion Jessie had. But it’s definitely not an easy gift.
All I could do in that car drive was cry, pray, and think. You wonder why? How? Sometimes the world makes you feel alone and it’s very hard to see God’s grace, His love. Not even two weeks ago, while I was in Chicago, my mamma told me about another warrior of ours: Carter. He’d just joined Jess. I didn’t know how to process that one in the moment but in the car I was crying for him too. For his little sister, for his sweet and loving parents. It’s hard to believe one of your favorite little guys is no longer here. How can it just happen? There won’t be any stylishly dressed seven year olds at our gala next year, rocking suspenders and a bowtie. No more baseball days to help Carter smile. No more helping him stuff JoyJars when he came into the Joy Factory. No more high school football games to show him how many people are rooting for him. We now get to walk with another family, down an unfamiliar road for them and an eerily familiar road to me.
This beautiful tension I’ve been invited into tests you emotionally and faithfully. Sometimes all you can do is step back, and be still.
Be still for them. Be still for yourself. And be still enough to give up the want to control and find reasoning, or place blame and instead let go to find and feel God’s presence through it all. This life we have is beautiful. Walking the tightrope between life and death teaches you to trust and just live. You have to fight for hope and chase after faith, clinging tightly to love and everyone around you.
The heartbreak can show you beauty. It can remind you of the memories, and it surely shows me not to hold back in the pursuit of joy, of compassion, of love.
Thank you Jess for giving me this job, this responsibility and calling.