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— 24h ago via Twitter
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blog ramblings: http://ow.ly/2zh0M [mattmooney]— 1d ago via Twitter
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RT @99balloonsorg: Great convo w/Charley from @showhopenow; unbelievable work n China w/ special needs orphans. video http://ow.ly/2zanh [ginnymooney]— 1d ago via Twitter
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RT @todayshow: Interesting fact: Houses on average have shrunk 300 sq ft in last three years// @ginnymooney we're Miles Davis [mattmooney]— 1d ago via Twitter
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RT @WELLcommunities: @charlestlee's talk on missional church from our last #PrayerGathering :: http://ow.ly/2yjd7 // you'll thank me [mattmooney]— September 2nd via Twitter
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A would love to crawl, but only goes backwards...so we just found him here:) http://campl.us/iCq [ginnymooney]— September 2nd via Twitter
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RT @WELLcommunities: @charlestlee's talk on missional church from our last #PrayerGathering :: http://ow.ly/2yjd7 [ginnymooney]— September 2nd via Twitter
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Thkful 4 great time w/great friends last nite, talking about where God seems to b moving thru @WELLcommunties. Thx @sethprimm & @scottspage [ginnymooney]— September 1st via Twitter
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Good conversation with Joe White; that guy has a way of making me want to be more like Jesus [mattmooney]— August 31st via Twitter
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Watching Temple Grandin with my love [mattmooney]— August 30th via Twitter
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The Atypical Life
It's a long story, but a good one. It's what we have. It's what we want.Email Subscription:
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{ 17 comments… read them below or add one }
Dear Mooney Family,
After watching the video Celebrating 99 days of life I am once again inspired by the miracles all around. I’m sure you have had many requests from many places to use the video you made. I am a volunteer for the March of Dimes an would like to share your story at a team captain meeting. I hope that it will inspire our teams to remember why we work so hard to raise money. And to remind them that each day we get with a child is an honor an should be celebrated. I also understand that your story is yours alone an i didnt feel right showing it without first contacting you.
I am a mother of two very rotten boys who are the joy of my life. My youngest was born at 32 weeks at a whoppin 3lbs 7oz. Jared is very passionate about the March of Dimes an “saving babies” every year he writes a letter that he mails out to all his family supporting the March of Dimes an fundraising for them. When he saw the video of your son he looked at me an said ” Mom thats why i have to keep raising money cause everyday counts!” So thank-you for inspiring my son an myself. I will wait to hear from you. God Bless your lovely Family!
Tiffany Town
Muskogee OK
thanks so much for asking…we would love for the video to be used in that way. keep doing great stuff
I watched your 99 balloon video on facebook and I can’t stop thinking about it. Thank you for your love and committment to Eliot. Your reward will be in heaven when you are reunited with him. I hugged, kissed and sobbed over my 3 boys after watching it. In the every day routine of dirty diapers and constant care of a 1, 2, and 3 year old, I forget what wonderful gifts they are from God. Thank you for the reminder. God bless you and your precious wife.
Rev. 22:20 . . . Even so, come, Lord Jesus.
Dear Matt,
My name is Jessica, and I am doing a project on Edwards syndrome. We each recieve a partner and get “married” we have a child that has a disorder, in my case I recieved Edwards syndrome. Me and my partner have a boy and in the end we have to make a powerpoint and then explain why or why not we’d keep the child. (we’ve already decided to keep our child because he will be ours forever and you can’t deny it. Also god knows why he does things.) One of the things is to contact a person who has had or has a child with Edwards syndrome. I’d like to learn more about it, not just because it’s a school project. I’ve become more aware about it and more interested. I’d also like to show your 99 balloons video to my class in my Power Point, because it is shows your love and committment to Eliot.
I came across your blog about Eliot after trying to find information about Trisomy 18 babies. A family had a son born today with it and they were so thankful for a live birth. They have been asking for prayers all along the way, and Hogan was born this morning. No more updates have been given yet. If you are interested in their story, you can see it at http://www.hogandominy.blogspot.com as told from the father’s point of view.
I loved the concept of 99 balloons-what a fitting tribute to your firstborn son.
Blessings to you and your family-
Jenny Mosley
Dear Matt,
My name is Adil and I’m a muslim from Saudi Arabia. My wife and I saw your amazing video “99 balloon” and we’re inspired by your amazing journy with your lovely child . We admire you and I want you to know that Eliot si inspiring people from all over the globe.
God Bless you you all.
Dear Matt, My name is Linda and 16 years ago on June 29th 1993 I gave birth to my daughter, Mary Emily. She had Trisomy 18 as well. She lived for 1 hour, but will live in our hearts forever. My husband and I have always said that through her birth and our dedication to her she accomplished more during her time on earth than others never accomplish in a lifetime. She was our fourth child. I had a 6,5, and 3 year old at home. We learned of the Trisomy at approx 30 weeks and if it wasn’t for God in our lives I have no idea how we would have ever gotten through everything. For me, my defining moment was when I realized that our blessed mother had also said yes to giving birth to a child knowing full well that he didn’t truly belong to her and she would one day have to say goodbye to as well. Once I realized that my purpose was to give birth to her, so that she could go and live in the arms of god, then I felt better with all my decisions. I had no idea how long we would have her, but there was no doubt in my mind that she would be here with us, even if just for a moment. We all have the same desire..to someday get to heaven. some of us just get there sooner than others and I know we will all be together again. Besides my daughter Mary, we now have six children ages 23, 22, 20, 15, 13 and 5. God has blessed me so much! Thank you so very much for sharing your story and continuing to share your story with others. God Bless you and your beautiful family as well.
Linda
Matt,
Watching and reading Eliot’s story is very close and personal to me at this time. We too are facing this with my Best friend and her beautiful little girl Keeley. She was born on April 14, 2010. My friend Shantele had positive test results back around 21 weeks with her choromosomal testing, she went on for the Level 2 ultrasounds and was assured that the baby looked perfectly fine and was not encouraged to pursue the amniocentesis ” we believe it is a false positive” is what she was told. Shantele carried Keeley full term and througout her checkups was still assured that the baby was fine and was almost 7 pounds. When keeley was delivered via C-Section and Shantele was shown her beautiful little girl she knew something was wrong because she was not looking at a 7 pound baby. Keeley was 5 pounds 3 ounces. On the outside there is not much deformity. Clenched hands, low set ears, small mouth. Everything else is on internal. She has a deformed lung, atleast one hole in her heart, a severly narrowed aorta, plus a few other things I cannot think of at this time. This is a very hard time for us as I know you can understand. Keeley is so beautiful it is hard to believe that she is not a perfectly healthy little girl.
I admire your strength, even though you said multiple times in your blog that you dont have strength, i feel that you must to have done all that you have to remember your beautiful little boy.
It saddens me that the medical world ” writes” these babies off. They don’t want to do much for Keeley because they say that it won’t do anything for her. We understand reality and understand what will happen sooner than later but they have gone to the point of not having her on oxygen.
But so far Keeley is holding her own and as long as she contiues as she is they will be sending her home with Mommy and Daddy on tuesday. I pray for my friend ( more like my sister actually) and I pray for her husband, but mostly I pray for Keeley, that somehow she beable to enjoy her short life with us all her. And I pray that someday we will all beable to meet her again. Keeley was born on my grandfather’s birthday and I know that when God takes her that my grandfather will be right there to help her run with the angels.
This is a true test of faith for me, but I do believe that things like this happen for a reason.
Your little boy is absolutely beautiful in every way, and my thoughts and heart are with you.
Jennifer Lyons
Hi, Not sure you remember me but I went to school at FSC for a short time and am also Susanna Traivs Posts cousin. I wanted to say that your story touched me very deeply. I have not lost a child but have lost a brother who on the anniversary of his death and also on his brithday I let a balloon go. My children didn’t get to meet their Uncle Sean but they have grown to know him with me keeping him in our family. Your children will learn to take these sad times and make them happy times to celebrate, like mine do Im sure. Take care and God Bless.
Your family is an inspiration. I have lost a child to Trisomy 18 and have lived for 6 years now with a son who had a stroke in utero who has some brain damage. You have been through so much, it is amazing what people can accomplish when they focus on only what is truly necessary. Thank you for sharing your story. Rest in peace Eliot.
Lori
Matt & Ginny,
I am not sure how to start this, and I am sure that you get tons of e-mails & comments all the time so I definitely will try to make this short, but I just want you to know that your story touched me more than I can ever express… I am supposed to be studying for a final right now, but came across your families story instead, and it was like something I have never seen before, truly. Eliot is so lucky to have parents like you two, and I know I don’t have to tell you how blessed you were to receive a gift like Eliot. He is beautiful. And the concept of the celebrating his life everyday and the pictures everyday.. It was breathtaking, & refreshing. Not to mention the 99 balloons being released. You are helping so many people with the 99 balloons organization. You guys are amazing, brave people and I wish you all the best in the world. Again, I know I don’t have to tell you this since its something you already know, but your little boy is watching over you probably beaming with pride at what courageous parents he has. Your story made me stop in the midst of my hectic schedule right now and realize that there is soooo much more out there, and so much to be grateful for.
Brittany
Hello,
I watched your segment on the Today Show and wanted you to know how much it touched me. We are also a Christian family that’s life has been touched by Trisomy 18. Our precious Lynsdi went to be with Jesus when I was 19 weeks pregnant with her. We later found out she had Trisomy 18. We have since been blessed with 3 healthy children. Lydsi will always be close to our hearts, and we long for the day we are all united in Heaven. May God bless you and your beautiful family!
Sincerely,
Amy Ehmann
Jennifer, thanks for sharing your own story. We join in hope with you. Let us know if there is anything we can do.
Dear Mooney Family:
I am currently 6 months pregnant with our daughter Regan who was diagnosed with Trisomy 18 about 1 month ago. Without a question in our minds we have continued on with the preganancy. At first we felt so alone, but after alot of research have found that there are thousands & thousands of us out there. Through a friend I found your website & watched your video on one of my “good”days. It was touching & has given me some ease to the endless possibilities of my days ahead.
Thank you for sharing your story.
P.S.
By coincidence my husband’s name is Elliott & also my four year old son. That connection also made your special so dear to my heart.
Best wishes to you & your beautiful family.
Dear Mooney Family,
What a beautiful story about faith and love. One thing I would like to share with you, however, is that the release of helium filled balloons is potentially deadly to the environment and wildlife including marine life such as endangered whales, turtles, and birds.
A few stories on the Save the Whales website include:
A young sperm whale was dying when it stranded on a New Jersey beach. A balloon had had lodged in its stomach, preventing the passage of food.
A leatherback turtle (which is an endangered species) starved to death because a latex balloon halted passage of food to its stomach. The only thing found in its intestines during a post mortem was three feet of nylon string attached to a balloon.
Perhaps you could include a little note or footnote somewhere on your website to bring awareness to this issue? It would be a shame that more animals would needlessly suffer and die as a result of such balloon releases.
Here are a few other links and resources addressing this issue.
http://www.roanoke.com/editorials/commentary/wb/244405
http://www.nytimes.com/1990/04/01/nyregion/l-balloons-effect-on-the-environment-867890.html
Thanks for reading,
Susan
Susan,
We’ve heard this a few times. You’ve put the word out for us. Thanks. We did not know at the time and aren’t releasing any balloons today- so hopefully this puts your mind to rest. Thanks for the encouraging words. I can’t help but note that, from where I stand, this represents a colossal case of missing the point, but I do appreciate your passion.
Matt