Wednesday, August 13, 2008

How could have I ever imgaine that I would be experiecing this day ? How could I have ever imagined that the precious gift of my son Elijah life would be so short and that a year ago today would be returned freely to the Lord, the giver of his life.

Today I have uploaded a video clip to youtube of the Gospel reading the the Homily from Elijah's Requiem Mass (Funeral) In his sermon Fr Miles talks about Elijah and not so much of what might have been for him, but rejoicing in what his life is and was and had achieved. He speaks of how Elijah had achieved much in his life. This is so true and Elijahs' legacy is that he continues to touch many people, even though he is no longer with us in the flesh. I know that through this blog and the clips on the youtubesite and through my continued interaction with families on the angelman syndrome listserve and the angelman syndrome forum, Elijah has reached out and shared his story, his life his smile and his joy, with people across the face of the earth.

Here is the clip - which can also be seen at

Part 1


Part 2

As his Dad I have met and shared and cried with people from all over the world. The experience of Elijah's passing has enabled me to share some in grief and pain and trials of some other families that I would not have been able to reach out to. This helps make sense of the pain me, it gives Elijah's death meaning and purpose, not that it didn't have meaning and purpose for me already - as in I knew that the he was returning to the Lord. This doesnt' mean that I wouldn't give my right arm or more to have Elijah and well with us.

"Grief is the price we pay for having loved".

I remember with grateful thanks the last days of Elijah's life. There are several things that stand out for me that I would like to share - these for me are profound revelations of God being in the midst of all that was happening.

Before we learned the full extent of the damage to Elijah's body and that we would not live, Julie and I had a conversation. In the conversation Julie said to me "why is this happening to us ?" and I found my mouth the word "So that God might be glorified"

In the early hours of the mornimg after learning that Elijah would not live, I spend time outsiude the hospital walking up and down praying. my prayre was soemthing like this " Lord, I know you keep the world turning and you are powerful and have the ability to restore Elijah completely to health and reverse all the damage that has been done to his body, and imagine what a tesimony this would be to the doctors and staff at the hospital and surely you will be glorified. It was like a Gethsemane moment (Jesus in the garden before his death) I prayed "Father if it is possible let this cup pass from me....and found my mouth filled with the words " but not my will but yours be done" This prayer was part of letting Elijah go, especially when it came to the last moments of his life.

I felt a pain in my stomach and an and anguish deep in my spirit as well in the first hours of knowing that my Elijah's body would not survive the damage it had sustained.

to be continued

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