The first time I encountered Matt Mooney was through a YouTube video, 99 balloons, that made me cry for fifteen minutes straight after I had finished watching it. The video went viral, and has had more than 4 million views. It tells the story of Matt’s eldest son, Eliot, who was born with an extra chromosome (Trisomy 18), had many special needs, and lived for just ninety-nine days. (I have put the video at the end of his story – do check it out.) And then I read his book, A Story Unfinished (affiliate link), an exquisitely-written memoir telling how he and his wife made sense of that experience spiritually. I am honoured to have him here to tell a portion of that incredible story:
I’ve made so many people feel awkward since I lost my son.
I think I used to be more couth- maybe even suave- but not anymore. And I’ve quit with the trying- too tired from years of grief now to catch back up to normal.
I’m the guy who stops conversations at parties when the other asks what seemed a simple enough question about kids.
And here’s what never ceases to amaze me. It’s the Christians that are most dumbfounded by my loss, by my grief and by my painful present reality. I am surrounded by so many that are accustomed to our story- those who miss Eliot along with us, but when I push outside the boundaries of those closest to me, I am reminded that those who have remained closest are the rarest of kind indeed. Because outside the circle of our dearest friends lies another group of people that the friends have insulated me from.
In the fable of my loss, I have labeled this most diminutive of people as the “never worries”. They are a society of smiles. Feasters upon cornucopias of calmness. They are the friends of Job. And I cannot tell if they actually have never been through something painful (and I really do hope this for them) or if they have known ache but feel pressure to conform to the status quo by bringing a casserole and a grin and a shout in unison of their favorite go-to verse for pain and suffering.
And I can forgive them. I am days away from the calendar telling me that it has been 7 years since I held him. It has taken ample work in each and every minute of my loss, but I am at a place that I no longer want to choke the little necks of these people. I can now see that I was one of them. It’s the worst parts of me that I always hate in others. I avoided pain and sought happiness. I believed that God’s will aligned with my best-case scenario of what my life looked like. I scurried past the verses on suffering as fast as I scurried past those who suffered. I had answers for the pain of others but little time to sit and listen.
I’ve ventured into this strange club of folks whom life has stuck it to. A community of brokenness that we all avoid like the plague. We are “them”- the ones whose stories make others cringe. But I see now that, given enough days, we are all “them”. Every life on this earth will know depths of pain. It is merely a matter of time. If you do not agree or do not want to believe this, then just know that I don’t want to be the one who tells you otherwise. I prefer it when kids believe in Santa.
In this world you will have trouble.
Though I have moved past most of my unhealthy feelings for Christians who cannot account for pain, a certain portion of frustration has grown at an increasing rate at the same time. Because pain has been the tool to bring me closer to a God that I no longer pretend to understand. This where my leftover resentment still resides. And though I would like us all to call it a righteous anger- admittedly, I cannot be sure.
But dear Christians, when we rob the faith of all pain and tell others instead that Jesus wants them to have bigger cars…we rob the gospel of its power. Because I have lost my son and I miss him every day. And seven years hasn’t begun to heal the hurt of not being able to hold him. And Jesus is still enough. My God has been near in it all. Not giving me what I wanted, but never leaving me. His promises endure. His goodness is evident. And that is the gospel.
In this world you will have trouble.
But take heart! I have overcome the world.
Matthew Lyle Mooney is the author of A Story Unfinished. He and his wife Ginny founded 99 Balloons, an organization that engages children with disability locally and globally. Many know him through the story of his son, Eliot- whose 99 days on this earth were commemorated with 99 balloons. He lives in Fayetteville, Arkansas, where he busies himself raising Eliot’s siblings- Hazel, Anders and Lena. You can follow the story at his blog – the atypical life
Over to you:
- Have you ever had an experience where it felt like Christians were ‘Job’s friends’, and didn’t understand what you were going through?
Watch Eliot’s story: