Friday, October 12, 2007

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

Monday, October 08, 2007

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 - 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.

Monday, October 01, 2007

Well Friday went ok for us as a family, although it was a full on day. Julie Francesca and I went to see a counsellor who we have been seeing for a couple of weeks. She is from Catholic social services, Julie has spent some time with her before around the whole area of grief after Elijah was diagnose with Angelman Syndrome. The appointment was just after lunch and we had been told by the courier company that they would be around to collect Elijah's things after 2. So I dropped Julie at the mall and took Francesca and headed for home. 2 o'clock came and went and so close to about 3 I decided I couldn't wait any longer and so i hunted for an elm key and began to dismantle Elijah's bed myself. I started on it but found that the slats and the mechanism underneath it that was used for lifting up the bed was to heavy to be able to lift out on my own. I called a Friend who is a teacher but who was on holiday because it's school holidays to come and help me. At the same time our close friend Andrea arrived at the house. Robert and Andrea helped me with the taking apart. The good thing about this is that I was here when they put it up and so knew at least how it should come apart. I guess it was a bit like driving Elijah to the vigil and the church and to the cemetery it was something that I would have preferred to do, something personal for me as Elijah's dad, an act of service for my son. It was not until after 4pm that the truck turned up to pick up the things, by then Julie has come home. The three men who cam quietly took the bed an Elijah's high chair, stroller, walker and car seat and in a short time they were gone, this was the leting go of these things. I guess we had been preparing ourselves most of the week and so when it came the day it wasn't as difficult as first expected. We moved Francesca into Elijah's room and moved the large photo that we have of Elijah from his room to the lounge. He is never far away but sometimes not close enough. I do miss hugging him and seeing him in the flesh each day, although I visit the cemetery each day it's still not the same. People say the pain will lessen over time - I trust that this is the case - by it is very real now, and really quite indescribably. All I want at the moment is my son alive and well, but I know this is beyond my grasp. Julie was folding some Elijah's clothes to put in a large plastic container to go in the Elijah room. I stopped and picked up one of the helmets that were made for him to where so he did not hurt himself if he experienced seizures - I found myself feeling angry - it's not *(&(* fair I found myself saying and found both the pain and the tears welling up. Julie moves to comfort me but I just needed the space. The Bible says - though I walk through the valley of the shadow of death I fear now illl for with your rod and staff you comfort me. The emphasis is mine in this passage and is important and i take comfort in these words they are not static words - I remind myself that it is a journey filled with pain and suffering yes, but a journey none the less