You know how some things are so close to your heart that you hesitate long before speaking them? Some things, people, and ideas are just too precious to not hold them close. I carry the Mooney family close like this in my heart, Matt and Ginny, and all four of their children.
This summer when we sold our house before having a place to move, we lived in the Mooney’s home, a gracious space dotted minimally with only things that matter, things of beauty, use, and meaning. A giant “E” rests up high on the dividing wall above the entire living area. The E is for Eliot, their firstborn. They have displayed his photos and footprints, but even those aren’t as real as the memory that rests there of his actually having been a gift to them and this world for 99 miraculous days. Eliot was born with trisomy 18 and wasn’t expected live beyond birth. Instead he lived a celebrated, world-shifting 99 days. Matt says, “DNA had placed faulty information into each and every cell, but that could not stop God from revealing Himself through a child who never uttered a word. Not a pulpit, not a slick presentation, not a best-selling book, but a 6 pound boy with trisomy 18. God found great pleasure to take a lowly thing in the eyes of the world and show truth.”
In letters Matt wrote to Eliot, he says: “At your funeral we released 99 balloons, each balloon representing a day of your life. How beautiful is was to watch. How quickly they were gone.”
When my own Titus’ body refused to gain weight and he had to come home from the hospital with a feeding tube that kept coming out, Ginny was my dear one who could put her hand on my arm, look me in the eyes, and say, “I know.” They didn’t ask to enter into the realm of knowing, but I have no doubt that they wouldn’t trade a second of it for the world. Matt and Ginny found themselves in a place of knowing the greatest love. They suddenly knew marrow deep just how valuable we all are, especially the ones the world might deem useless or too much to handle.
Fast forward to an organization they called 99 Balloons with their first initiative called rEcess (notice the capitol E). rEcess is a monthly respite program for families affected by disability. Children with disability as well as their siblings come hang out with trained volunteers, and the goal is to make it the best night of their week. There are currently 12 rEcess sites nationwide, and one in Canada, and each site is operated by a team of volunteers.
We at (in)courage would like to invite you to help give a rEcess-makeover to one of 99 Balloons’s awesome teams! Friends, this is such a huge deal.
Join us as we team up with Pure Charity in our new Giv(in)g campaign to provide a rEcess site with new supplies, toys, and sensory equipment. Join us in blessing a rEcess site with tools to further serve their community!
Many have come to recognize local children with special needs as one of life’s greatest delights and honors to serve.
Seth and I support 99 Balloons because we know very personally the impact of Eliot’s life on Matt and Ginny, our community, and the even the world. The way God taught them to love has changed us. If, when we serve the least of these, we are serving Christ, then we come to know that the “least” aren’t very least at all.
Leave a Comment
Lisa-Jo says
Amber – this story is a beauty. Heartbreaking kind of hope, you know? I know you know. Thank you for reminding us.
Amber Haines says
Thanks for seeing the hope. It’s a beautiful beautiful thing to me.
Amber Haines says
Thanks for seeing the hope. It’s a beautiful beautiful thing to me.
Kathy @ In Quiet Places says
Is there a link that lists where the 12 sites are located?
Amber Haines says
Yes, Kathy! http://99balloons.org/sites
Marilyn says
What a beautiful and amazing story!! Eliot’s story has touched my heart in such a deep way. I have no words…
Rachel says
What a great reminder 99 balloons always is. My husband and I are totally adding this to our places of giving for February, for sure. Thank you for sharing Eliot – he continues to live on.
Beverley says
I remember holding a friend’s baby who lived only 21 days and thinking totally overcome that she would share him with me even for a moment. He was born with his heart upside-down and even the Dr’s couldn’t figure out how the blood was getting round his body, but for 21 days it did.
Stephanie says
Thank you for shraing the story of your dear friends!
Angela says
Amber, God Bless you for sharing this post today !! Every little butterfly in my heart is fluttering as I read this INCREDIBLE example of God’s LOVE. No time to tell my full story here, but my small child has a chromosomal deletion and is ventilator dependent after an 8 month hospital stay. There are no words for me to describe how grateful I am that you have lifted up this organization in an awesome way. Families like mine need to know we are not alone…. we are never alone in Christ, but isn’t this one of the ways He shows us that? Blessings to you <3
Karen Thompson says
As a single woman with an autism spectrum disorder. I uderstand what you are saying about the least of them. I think that the general world at large looks down on disability and views people who need extra love and care as a burden to the rest of society. But like you and the Mooney family, I know that we can learn and grow and be useful in other ways. Anyone born in this world is born for a reason, because God gave them life, no matter how short, and he loves them as he loves us so we are all valuable and that is why we care, because Jesus cares.
tami says
so true! 🙂
Amber Haines says
I really love hearing this from you, Karen. Thank you.
Beth WIlliams says
Amber,
Every child no matter how they were born is precious to God! They should be special to us as Christians also! God can and does work miracles in people’s lives daily. The miracle might only be a child born for 99 days or just 21 days or whatever. Each child can teach us lessons and help teach the world about disability and how to reach out and help!
God Bless! 🙂
Tara says
Amber, thanks for sharing this…I had heard/read their story before, and it remains so powerful. Another blog I read posted about a sweet baby in Africa that has the same diagnosis – thought you might like to read about little Martha here: http://emonamission.blogspot.com/2014/02/meet-martha.html