I wanted to follow up with some memories of our 2 days... I will be honest, we didn't sleep much and we put so much into 48 hours (a lifetime). After "Little" Charlie was born, we had him baptized and then we took family pictures... we found a photographer through the organization, Now I Lay me Down to Sleep, the organization lists photographers that have had training in providing their services in situations such as ours. Jill Laber (Live.Love.Laugh Photography) did our pregnancy photos and arrived bright and early Monday morning to help us capture our son's life. She has provided some early pictures which we will be using for the Memorial service. After our pictures, we made footprints in clay and started having visitors, which was wonderful - as I stated earlier, we wished more could have met our beautiful son, but we had a very short time with him.
The first night, both grandmothers took shifts and held him for hours through the night... our evening nurse Ani, stopped in often to make sure everything was ok. On Tuesday we were moved and continued with visitors meeting our determined little man. Tuesday evening, we knew our time was growing short... at one point Daddy had to revive him because we just weren't ready to say goodbye and "Little" Charlie pulled through and were thankful when the morning came and he was still looking into our eyes.
On Wednesday morning everyone was exhausted and while Daddy took a nap with Hannah, "Little" Charlie laid down with me; by 10 am I knew that he was struggling again and called in Jennifer our "daytime" nurse. Jennifer confirmed his heart rate had slowed and everything we tried didn't help. I woke up Daddy and the three of us laid down... by 11 am we knew he was no longer with us.
I can't believe that it has only been a week, it feels like it was just yesterday that I held him in my arms. I hold comfort in knowing that he is with God, he is whole and without pain and that while on earth he was always with us and always held with love, that he was never alone and loved unconditionally every moment of his life on earth.
Tomorrow (1/6/10) we will celebrate his spirit in a memorial service, we have decided to open it up to our family and friends as we know that without your prayers and support we would have stumbled... It will be held at 4 pm at Christ Church Plano (4550 Legacy Dr., Plano 75024) in the Chapel (not the Sanctuary), afterward will meet in the Fellowship Hall.
We have set up a Memorial Fund with the Trisomy 18 Foundation underneath Charlie's name and can be reached through our Legacy Page:
http://www.trisomy18.org/site/TR/Events/General?pxfid=6670&fr_id=1070&pg=fund
It is our hope, that in the future other families who face the decision we were given won't be limited in their choices based on economic or social factors; rather, they would make the choice based on their faith. While the dreams of sports games, graduations, and other celebrations of life are no longer available to you, the dream of giving birth and holding your child for a moment is truly the greatest gift given to us as parents and one that I would not trade.
Our love to all ~ The Deebs
James 1:17
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