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

Friday, August 01, 2008

This has been a full on week - over all as a family we have been pretty well. I did have some flu symptoms on and off all for several weeks but on the whole we have been well. this is significantly due to the house we are living in this year. Although the power bills have been higher we have been on the whoel wamer and dryer. We moved to this house a month before Elijah left us. On Monday morning francesca complained of having a bit of a sore shoulder and intially we put this down to how she had slept and so off she went to school and Julie and I to work. When i picked her up in the afternoon she told me she had been achedy all day and so I decided to take her temperature when we got home. Her temp was 38.4 (101.12) my first reaction to this was one of shock i gave her parcetemol to help bring it down. I was june last year that we temps like that in our house and it reminded me of the week of Elijahs' death. Franecsa had been unwell and had a high temperature and cough and a sniffle and then elijah picked up something simlar. It was this coupled with Elijah's inability to control his body temperature that set off the seizures that caused the damage to Elijah's body that took his life. I struggle emotionally with high tempratures and seizures as well, hence the shock reaction. Francesca temp this week climbed as high as 38.9 (102.2) before subsiding. I guess what I first experienced was what we became so used to with Elijah - and then I realised that Francesca is 7 and so less of an issue. I did for a split second thinking I hope Elijah doesn't get this. A double edged emotion - the reality that Elijah is not with us to be affected and the reality that Elijah is not with us.

I don't think that will ever change - you know that expectation that perhaps he will appear or i will wake up and find it is all a bad dream.

Elijah going to the Lord has increased my longing for the Heaven for the life which is to come, which I know for sure is but through the veil. I learning tonight by email of the death of an american pastor and evangelist Greg Laurie. I watched the following clip which is Greg sharing about his expereice of losing his son. I could so realte to the living moment by moment and wathed it through teary eyes. I share it with you.

peace be with you and yours