This is Mason. He died of a leukodystrophy today.
This journey of losing our Jud Bud has thrust us into a community of people who are TRULY walking (or have walked) through the shadows of death—death of their beloved kin—precious souls born from their own flesh and blood. I read daily about moms and dads nurturing their disease-plagued sons and daughters with every ounce of their broken hearts, until their sweet children breathe their final breath.
It is absolutely heart-breaking.
Each one of these parents is walking the worst nightmare of anyone who has ever been called “mom” or dad”.
I think of Zoe and Elsie who are beautiful baby girls clinging to life as I type.
I think of Carmen, Jack, Kenji, Makinley, Jaden, Madylen, Ailene, and Ashleigh who, along with Judson, have all lost their lives to Krabbe in the last year.
Before Krabbe began destroying Judson’s body, the realities of dying children were so far off my radar, though when brought to my attention, I would try to imagine the pain and sympathize with the families. However, I could go back to whatever I was doing before and my life continued as usual.
I read of these parents and children and it taps into the very core of my own suffering and pain. I empathize with every aspect of their affliction, and the ways their lives are being absolutely ripped apart. I can no longer go back to what I was doing before, and my life will never continue as usual.
We are journeying together. I am journeying with people I have never met before and grieving deeply over children I never knew.
But I had actually met Mason.
Mason was a typical 11 year old boy who was riding his bicycle back in February of this year until the onset of adrenoleukodystophy (ALD) struck soon thereafter. Mason, his mom Mary, and his sister Kayla were at the Hunter’s Hope symposium that we attended just a couple weeks ago.
I first saw Mason when his wheelchair was being lifted into the van at the lodge. As he sat their smiling, his legs suddenly began to spasm. All the memories of my sweet little Jud came flooding back to me. There were so many leukodystrophy kids there, but it especially hurt to see Mason. Mason reminded me of Judson—both such handsome boys with beautiful smiles—yet, with similar deterioration of their bodies. It was as if Mason was an older version of Judson. Seeing Mason’s legs tremble triggered recollection of my frequent massages of Jud’s legs and how I would hold them to try and minimize the spasticity…it was as if I wanted to reach out and do the same for Mason.
Today Mason was set free from his broken frame…
But his family must now live in brokenness. I know this brokenness. I live this brokenness.
My heart is with Mason’s family. And it is my prayer that as they experience the literal shadow of death, they will also experience the hope of the Shepherd, who takes the fear out of evil, and restores souls. (Psalm 23)