This us a photo that my Dad sent me yesterday, one of the opportunities that had to turn Elijah's world upside down and you know what he enjoyed it just all the more and although it's a bit hard to see the smile here on his face I can assure you that he is smiling. We all miss Elijah being physical with us, climbing on top of us and down and kicking and from time to time pulling hair. Always doing something - climbing on something or climbing down or trying to get in or out of something. This was on the reasons why it was so strange and hard in a way to see Elijah inactive at the hospital for so long, it was just not him and I guess we were all hoping that within a few days that he would be back to being his active self as was the case following the other visits to the hospital. Even in his new bed, there was no stopping his movement and we never really managed to get blankets over him at any time during his life apart from when he was a small child, and safety sleeps for a short time and lots of safety pins. I'm going to share some more retrospectively about Elijah's time in the hospital and the journey - I'm going to share some photos as well that some might find hard to see but these are part of the journey, and I'm choosing to share them as part of the journey.

Lying still, or staying still in any way shape or form was never an activity that Elijah specialised in even when he wasn't feeling so flash there always seemed to be some energy in his system that sparked him along. Only if he was really not doing well was he not active. Even following visits to the hospital it could be hard to convince the hospital staff that he was still having seizures at time because he would be so active in between and the staff saw his activity as a sign that he was ok and nothing was going on. I guess it becomes easier over time for Julie and i who have observed Elijah over the last year +. On thursday night we put Elijah off to bed, we knew his temperature had been up - as a result of the coughy bug that had been going around and so so we knew that we might have been in for a bit off a challenging night. Elijah had couple of drop seizures during the day but not alot but none the less we prepared ourselves for a possible long night as we had done a number of times before. I came home from work and we had dinner and fed Elijah and prepared him to go to bed as always little did I know of the night ahead. Elijah settled and stirred a little after 8 and he was hot 39 deg C and so we took some of his clothes off gave him a wash down, Julie had given him paracetemol and so after hi temp still being up we gave him a dose of Ibuprofen, he was having a few drops and was a little unstable, we cooled him off with a cool facecloth and things settled down close to 9pm and so we let him settle go off to sleep which he did, and so we put Francesca to bed and in time both Julie went to bed and so did I.

To be continued

The last couple of days have I've been emotionally unstable - tears close to my eyes, and a bit distracted. On Sunday night I put pen to paper (read fingers to keyboard) to write a dedication message about Elijah for the Angelman New Zealand newletter. It took me a good hour or more with tears to write it and this is what I wrote.

Elijah Michael James Humphries -Born 7 February 2004 Called home - 13 August 2008 - treasured son of Darren and Julie and much loved brother of Francesca. As a family we give thanks to God for the life of Elijah, and for the Angelman Syndrome that he journeyed his life with. The house is quieter without Elijah on hands and knees chargin up and down the hall, wrestling with Francesca, smiling and laughing and seldom frowning, Bananas, go off more quickly because they are still here, and not readily consumed, as he was accustomed to do, the nights are quieter too and it took some getting used to sleeping through the night and not waking to be gretted during the night by a smiling often naked little boy displaying his handiwork a shredded nappy or pooh paintings. For all of these things we give thanks. A testimony to his life is the tremedous joy he brought to everyone he met.It is only in his passing we have ralised the lnumber of people Elijah and his short life have touched and will continue to do so. We grieve now but only becuase we loved. We express our thanks to all who have sent us cards and messages. Please continue to journey with us via Elijah's Blog - http://elijah-angelstory.blogspot.com/ which Darren continues to write. We continue also our journey in Elijahs' memory, working with families of children with Angleman Syndrome and working to promote an awareness.

I guess it's just the reality that Elijah's no longer physically with us - takes some journeying through. I've been sleeping ok, but phyiscally on edge yesterday - told my boss frist thing in the morning - funny hope people react when you tell them you are emotionally unstable today and could burst into tears at anytime. It took some energy yesterday to focus on what I needed to do at work, one job at a time.

I slept ok last night and will see how the journey goes today - the photo above was taken at the Gethsename gardens here in Christchurch a beautiful private gardens. It was the photo used on the from of the Order of Service for Elijah's funeral. It's funny how some of the nicest photos are the ones you take youself and are also very improptu.

I'm glad that the Lord has something much better in store for me cause the pain of loosing Elijah is intense, and can just creep up on me when I am least expcting it.

Peace

Darren