the story
the atypical life::
looking back::
This is my second blog. I began the first one upon receiving the news that our unborn child had a condition called Trisomy 18. I could try to explain the ins & outs of this diagnosis whereby the coming babe had 3 chromosomes on his 18th set- there should have been only two- but I’ll just give it to you the way it was given to us: ”not viable for life”.
His name was Eliot, and I’ve never beheld a life more beautiful than his. He lived for 99 Days, and at his funeral we released 99 balloons to honor each unpromised one. That first blog is a holy space for us, and we continued to blog on it throughout our first year of grief.
In the days since, Ginny and I have: struggled with how life looks now, bellowed in laughter at the many joys along the way, become parents of three beautiful children whom we affectionately call “the rascals”, and doggedly sought to live our lives in light of the lessons that God taught us through the life of our first son.
looking down:
We live in Fayetteville, Arkansas- surrounded by the beautiful Ozarks and friendships so deep that “friend” no longer suffices. I get to work for 99 Balloons- an organization we founded serving special needs children, families and orphans. The burning desire to raise the stature of these children on a global level arises from the ashes of my own life.
I have held and been shown the infinite worth of one. In a world that exalts power and beauty, may we be odd- drawn to the broken, those marginalized due to imperfection. Because God is right where He says He will be- with them.
I love to write. Don’t profess to be any good at it, but committed to the practice nonetheless. This is my space to think, pray and process. I am working on a book, but it may just be for me.
looking ahead:
We have recently adopted a little girl, named Lena, from Ukraine. She has a diagnosis. More importantly, she has a smile that captured us and we are so happy to have her as a part of our family. Ginny, Hazel, Anders, Lena and I are figuring life out together. Where the outside world sees chaos in our home, we see beauty. Where they see a family of five, we see six.
It’s all a little atypical, but we like it that way.
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Dear Matt and Ginney, Your story about Eliot brought me to tears. I gave birth to a beautiful, healthy, premature baby boy on July 9, 2011. He was 4lbs 1oz of perfection in my eyes. He’s thriving and I love him more than I can say. When I was pregnant, I was told he had cysts that could be markers for trisomy 16, but not to worry, he had no other markers. Being a mother, I researched Trisomy and agonized over what could be. I came to a decision, that no matter what i found out, I would not abort. I would love him for 10 minutes, days, months or years. What ever God gave me. They cysts went away and he did not have Trisomy. I spent many days in front of my computer screen while I was pregnant, reading about babies with Trisomy. My heart hurt for each and every one of these babies. Oddly enough, I didn’t ever see your story. Tonite I was at a friends house and saw a Woman’s World Magazine and saw Eliots story. He reminds me of my son and once again I was brought to tears. The other night I was frustrated at the lack of sleep I am getting. Again, I was humbled by your story for even being aggravated at sleepless nights. What an awesome child, a fighter for sure!! I know he is one of God’s little angels and that he is pure perfection as well. I believe that there needs to be more information about Trisomy for people. Mostly what I found was techincal diagnoses or memorials and tributes. I would love to contribute any way I can to this cause. I want to help these families as a way of Thanking God, that my little boy was spared. Just to let you know, you and your wife are amazing people. May God continure to bless you!!!
Dear Matt and Ginny,
My name is Carolina Reissig and I live in Uruguay, a small country in South America. For some reason or magical coincidence, I ended up in Youtube watching your story. I cannot describe with any words the feelings I have right now in my heart. I’m a PROUD mom of Benjamin. He is my sun, my star, my laughs and my tears, and he makes everything worthwhile. I have many many things in my life, good and great things. My parents, my sister and my brother, a little brother in heaven, my friends, my work, my life. But I can’t imagine all of those things without Ben. So for that, I wanted to express gratitude and all my love to you and Elliot. He showed you what life is, what love is. I hope more human beings are as perfect as you both are, and are able to live smiling and passing through that amazing life message.
All my love to you,
Carolina Reissig
Montevideo, Uruguay
Carolina,
Thank you for taking the time to write and let us know of Benjamin. We so appreciate your words.
I saw the video clip of Eliot’s life for the first time today. I gave birth to my premature boy on November 27, 2011. The road has been tough, but after seeing what Eliot taught you, I look at the beauty of our experience. Thank you for sharing your journey. It taught me to cherish every day to the fullest and not to take anything for granted. Your family is an inspiration to all! By the way, Eliot was one of the most handsome baby boys I have every seen
Barbara,
Thanks so much for your kind words and I must agree…handsome as all get out.
Hi Matt,
I saw your 99 balloons video when it was first released and cried my heart out. Over the years, with a baby boy and new career I totally forgotten about it until somehow I remembered it once again – which brings me here to your new blog. I love the way you say that “where the outside world sees chaos in our home, we see beauty”. It reminds me how much love we have to give each other in the world, and what matters most in life. Thank you so much for sharing your very meaningful journey in life.
Thank you so much for all you do…I remember seeing Eliot’s beautiful video the year our son was born. I remember thinking how adorable he was and how strong you all seemed on Oprah. The next year, our son was really upset when he lost a balloon in a parking lot. I remembered Eliot’s video and explained to Jacob that the balloons we lose float up to Heaven to cheer up the children- like Eliot- who live there. When we discovered that our son had passed away 6 weeks ago at 19 weeks and 2 days into our pregnancy, I had this “feeling”. He measured so little…it looked like his little ankles were crossed during the ultrasound. Flashes of Eliot popped into my mind. As it turns out, our little Ryan had trisomy 18 too. Since I didn’t get to meet him face to face or hold him, I have relied on sweet Eliot’s picture to give me an idea of what little Ryan might look like. At 4 1/2 years old, Jacob remembered brought up the story of his balloon floating to Heaven….we hadn’t discussed it in 3 years. It certainly is an up and down journey, but your family, your successful subsequent pregnancies, your adoption, and your work are bringing me a great sense of peace. We hope to have a successful subsequent pregnancy and we also hope to adopt one day. Thank you for all you do!
Elizabeth,
Somehow this comment escaped my view for too long. Thank you so much for taking the time to write and tell us of your own journey and of Ryan. What a story about Jacob’s balloon and his wise memory. Thank you.