Friday, June 24, 2011

The Celebration Service

I wanted to put this up so that when I look back through this blog of our journey I will have this with me, forever.  Also, for our dear friends who weren't able to attend.

Greetings: (I walked Heather to her seat, then to the podium. Wind came out of my sail. I couldn't speak-at all.) I looked down at my journal, tried to look up and greet everyone, but I couldn't find a soul to make eye contact with. ::long pause:: "whew, I cant believe I'm up here doing this." (big lump) I could not say one word.  Then I prayed "Lord, please get me through this.  I need your peace."

Okay, here we go "I want to thank each of you for coming today to honor the life of our son." My goodness that was hard.  That's a heck of a sentence to say.

I prayed over us and the service, then my brother Allen came up and sang a song he had written. Allen "I'm honored that Aaron and Heather wanted me to do this, because I don't sing, nor play the guitar very well."  It was perfect from where I was sitting.

Then I stepped back up "Trisomy 18: Chromosomes come in pairs, in the case of T-18 the 18th chromosome is a set of 3.  Many people are more familiar with Trisomy 21, more commonly called Down Syndrome."

"The education and awareness in the medical field, is today, where down syndrome was 30 years ago." "I am on a mission to speed up that learning curve."

"The percentages are very staggering of Trisomy 18 children that survive, which is why they dub the syndrome "incompatible with life".  Thirty years ago, when few knew what down syndrome was, a child was given the chance to live.  Today, somewhere out there that man works at a local grocery store.  None would say he was "incompatible with life".

So what happens to the children that do survive?
At this very moment there is a mother of a two and a half year old, who is speaking to state representatives about her child's disability qualifications.  This child qualifies because of his disability, but in the state of florida, if you are a hard working citizen, with a child that has a disability, this child may not qualify for social security or medicaid because "you earn too much money". The at-home nursing care that is needed for this child is only provided through medicaid."
So what can we do? Pray for the Trisomy Community, Pray for the families that go and speak to med students, pray for those that go before local government representatives. And always remember, a life is a life, is a life."

Then Heather introduced our son. Heather "He wanted to be acknowledged, he was very strong-willed, he loved to snuggle with his umbilical cord, he loved hearing mommy read stories and sing, he would have been a binky baby, he knew the sound of his daddy's voice and responded, he loved ice cream and cheesecake, he hated when mommy ate ice, he got hiccups at 9pm every night, he loved when daddy would paint mommy's belly, he loved it when his big brother Andrew would talk to him throughout the day, his mere presence in our lives brought joy, hope, a deeper faith, and a better understanding of unconditional love.   He taught us to believe in miracles.  Thank you God for allowing us to be his family for eight wonderful months."

Then our girls spoke about David.

Then I closed "David's story is not about a child that didn't make it into this world.  His story is a story of Hope no matter what the diagnosis.  David has certainly out lived his life.  He has shown me to never give up, to believe in miracles, treasure each moment, and make every day matter."

"All the sadness and pain comes from my selfishness. All the peace and comfort comes from the one who breathed life into this child.  David's story does not end today. Thank you"

After the service we had a dedicated balloon release.