Matt currently serves as Executive Director of 99 Balloons, a non-profit organization based in Northwest Arkansas that helps others engage children with special needs locally and globally. We’ll be featuring an interview with Matt either as part of our Inclusion Fusion Web Summit this fall, or as a special Inclusion Fusion event.
Matt’s also a very talented writer and storyteller. He’s authored a book, A Story Unfinished, about the remarkable journey he and his wife Ginny experienced with their son, Eliot, who lived for 99 days with a genetic disease (Trisomy 18) that had made his birth unlikely. Watch as Matt shares the story of Eliot’s life…and God’s goodness even in the darkest days:
I’d asked Matt to answer the question how he thought God might use Eliot’s unfinished story to bless other families everywhere with children who experience disabilities. Here’s his response. Happy Father’s Day to all the dads who faithfully care for kids with disabilities, both seen and unseen.
I loved the question so much, I feigned maturity and tried to let him finish it; but unbeknownst to him my answer had been 6 years in formation.
Eliot would be six. Or should I say he is six? This is just the beginning of the complications that come when your son flees this world before you do. And, for today, though I remain undecided, let’s just say he would be six.
That interrogative that leaked from the lips of a friend can be surmised as follows:
Why after all the hard, did you choose hard again?
Now, let me take this moment to jump up on one of my many soapboxes and set some things straight. This is just the sort of question that many people wince at upon hearing- because people say such stupid stuff and when they do we wince. Anyone who keeps one foot in church circles and has also walked through something as immensely painful as losing your child knows the sting of stupid.
But this is not that. This is honest. And I celebrate honesty wherever the endangered species pops it head up. I love this question.
Now let me sprinkle in some context to help you understand why someone would ask me that:
Eliot would be six because he lived for 99 of the most beautiful days that I have known. Within these passing years we have been blessed with two biological kiddos that are both perfectly healthy and perfectly behaved (as far as you know & excluding that Chick-fil-A scene last week whereby three small girls came screaming out of the playground with minor injuries inflicted upon them by my son….I’m sure they had it coming.)
And so, losing Eliot was the hard that the question referenced.
Just over a year and half ago, my wife and I spent six weeks in Ukraine in order to bring home our fourth child. Her name is Lena. She has a medley of profound disabilities which I will spare you from trying to explain. On top of her special needs, the majority of her life had been spent within the walls of institution. She was non-verbal and immobile when we brought her home, as well exhibiting behaviors associated with a life of cribbing and neglect.
And so, she represents the choosing hard again part of the question.
Remember, I’m not wincing with you.
If I have learned anything from walking a road of loss- one I begged not to go down, then it is encompassed in the following words as best as I am able. God is not about our comfort. He is about His kingdom coming to this earth. And when we seek our own happiness in the ways that seem so native to our mind, we walk straightway into a most miserable life.
His ways are not our ways.
Therefore, where I pinpoint my own happiness lands me instead on an island of death. He is found on roads that we would not trod but for His voice calling us down them and our recognition that it is He who awaits at the end of the trail.
We did not rescue Lena. God, through her, is rescuing us. Saving us from a life spent seeking things only found in Him but on a road where He is not.
At thirty weeks pregnant Matt Mooney and his wife Ginny were informed that their child had a genetic disease Trisomy 18. They were told that birth was unlikely. That life was not viable. That a bleak future awaited.
They were not told that they would get 99 days with this child and these precious days would change them forever. Through the sleepless nights, an unrelenting desire for answers, and the frightening reality that slides in where optimism once resided, Matt and Ginny walked with family and friends through the life and death of their first born son.
At Eliot’s funeral, 99 balloons were released into the air to represent the 99 days of his life. This act of remembrance stirred the hearts of a community and a country.
The story of Eliot was featured on Oprah and the Today show. A video of his life was watched by millions on Youtube. But the story of Eliot’s life and death is not the end of this journey. Through the impact of his life, a legacy has continued.
A Story Unfinished chronicles a father’s journey of pain and redemption and the mystery of God and His goodness in the midst of it all.
Available at Amazon and booksellers everywhere.