PeekabooNWA

99 Balloons for Eliot and rEcess

Posted on 30. Jun, 2009 by admin in Personal Stories

Journal Entry: January 31, 2007

“When Eliot was born I heard a very weak and very faint cry. I said, ‘he’s crying! That means he’s breathing right!?’ Not the words usually spoken in a delivery room.”
(excerpt taken from www.ninteynineballoons.com)

To be a parent means to enjoy the little things in life, a first smile, a first word, a first step. It also means bearing the responsibility of worrying about all the possible ‘what-if’s,’ like a fall from a seemingly safe monkey bar, a bicycle accident, and worrying about every possible illness that lurks on every door handle.

But what about the parent that is faced, not with a ‘what-if,’ but a ‘what is.’ A fate that will change their life and the lives of those around them forever — all before their child is born?

Two months before he was born, Eliot Mooney was diagnosed with Trisomy 18—a genetic disorder with a very low survival rate.

Eliot’s diagnosis came after an ultrasound while Ginny was 30 weeks pregnant. Instead of giving up on the small life that they had waited their entire lives to meet, Eliot’s parents, Matt and Ginny, began writing letters to him daily and keeping a blog to keep family and friends updated on Ginny’s pregnancy. They wanted to take each day of his life and make it important and special. They have exceeded beyond their wildest expectations, and in the meantime touched the lives of families across the country.

Trisomy 18 is also called Edwards syndrome and is the second most common trisomy, after Trisomy 21 (Down syndrome). It occurs in about 1:5000 to 1:8000 births.

Trisomy 18 syndrome is due to the presence of an extra #18 chromosome, meaning that Baby Eliot had three chromosomes in the eighteenth position instead of the normal two.

Unlike Down syndrome, Edwards Syndrome is fatal, with most of the babies dying before birth and those who do make it to birth typically living only a few days. However, a small number of babies (<10%) live at least one year.

Eliot’s parents knew that their days with him were few but instead of grieving they embraced their precious time with their little boy. They knew they had the rest of their lives to grieve.

Journal Entry: January 31, 2007

“I went to the hospital where Eliot was born the other day. I sat outside of the room where he was delivered, the room where he took his first breath, room number 15. I went, not to be sad, but to remember. I thought that if I could just remember what it was like on that day, then my sadness would begin to turn into something else… gratefulness, joy, hope. I wanted to remember hanging so desperately onto Christ for strength that I could barely breathe. I wanted to remember the unknowns… Boy or girl?… Life or death? I wanted to remember the joy of that cry- because that cry meant that he was alive, that cry meant time- and I hoped, with all that I had, for time with this child I carried. I wanted to remember what it was like to stay up all night holding him that first night because we had no idea how long we would have with him. I wanted to remember, and I did. I relived day number one and I smiled.”

When Eliot was born he made his first home in the Willow Creek NICU with wonderful nurses and staff that let his parents bend every rule to make them as comfortable as possible and to best care for their new baby boy. At just over a week old the Mooney’s were given the okay to go home. Nervous and scared they were equipped with all the information and techniques on how to best care for Eliot. They made the decision early on to turn the old saying ‘live each day to the fullest’ into their family’s way of life. Each day of Eliot’s life was a celebration of his birth. They commemorated each day with a photo and a letter to their little boy. The following is taken from their blog on www.ninetynineballoons.com

Journal Entry: August 1, 2006

“We celebrate Eliot’s life and the miracle God has given us in him each day at 4:59pm with a birthday party. Today he will be 12 days old!! Each day is amazing and we are loving being parents and seeing the many answered prayers.”

Journal Entry: August 23, 2006

“Eliot turned one month on Sunday! (Hands down, favorite sentence I have ever written.)”

Journal Entry: October 18, 2006

“Saturday was one of the greatest days I have ever experienced. Eliot was 86 days old & Matt and I took him to the NICU reunion. It was a “roundup,” so we got to see the ever-so-serious neonatologists and sweet nurses from our 12 days in the hospital. We got to see the look on their faces when they saw that Eliot was there. I’ll never forget those looks as long as I live. They were so surprised.

The logic of medicine says he should not still be alive, but he is. He’s strong and sweet and such a fighter and I felt that day the way I would assume a mother would feel if her son became president or won the heisman or developed a cure for cancer.”

July 20, 2006-October 27, 2006
“Our fighter of a son has gone to be with Jesus. We celebrate his life and revel in the fact that he is finally well. We are sad. We miss our son. But do not mourn for us. Celebrate with us. Eliot’s life points us all to worship. Join us.”

At the service held for Eliot, family and friends released 99 Balloons. To watch a beautiful short film of their story visit www.youtube.com and enter 99 balloons in the search box.

The video has been played on Oprah, and just recently the Today Show on NBC. The last thing the Mooney’s are searching for is fame, but any opportunity they have to reach people who are grieving a loss, and offer them a little hope, they are happy to share.

After their loss, instead of giving up, Matt and Ginny took the time to figure out where to go “from here.” They spent their days looking through pictures and crying for the son they had lost and for the wonderful memories that he had given them. What they came up with was more than amazing.

The first idea that came to fruition was a necklace named, “eliot” designed and created by his mother. The design of this necklace is purposeful. Eighteen black beads and a single jade bead represents the unique creation that Eliot was to his parents. The necklace sales for $30 and 1/3 of each sale will go into their non-profit 99 Balloons. visit virginiabeads.com for more information.

The 99 Balloons non-profit organization that was started in Eliot’s memory has had a positive impact on many families in Northwest Arkansas with special needs children thanks to rEcess, the once-monthly program which provides parents with a caring, safe environment where they can leave their kids while they take care of anything they need or want to around town. The Church at Arkansas in Fayetteville has graciously opened their doors to this free program. REcess welcomes not only special needs children, but also their siblings. Each meeting of rEcess offers a different “theme,” and children have the opportunity to create crafts and participate in fun activities. The volunteers at rEcess are a big part of what makes the program so special. They work one-on-one with the special needs children and have a passion for what they do. They are there because they want to be; not because they have to be, just another reason this program is truly special.

If your family is considering being a part of rEcess, Matt asks that you first visit the website, www.99balloons.org and e-mail him about getting screened for the program. Since the goal of rEcess is to best serve families with special needs children, a screening process is completed to ensure a good fit for both the family and rEcess. REcess is held the first Friday of every month from 6-10 pm, and sessions will resume in September. Be sure to check the website for updates and for a link if you wish to make a donation to 99 Balloons.