Well it’s now been 9 month’s since we lost Elijah. And some days the feelings are just like that. Perhaps we misplaced him or he is hiding in a cupboard or under a bed waiting to peek a boo or suddenly appear and smile in a way that only he could, which says here I am. A bit like the day that all was quite in the house, and quiet in our house always meant that there was something going on. Even when you called “Elijah” sometimes there was a characteristic laugh or noise, or a complete silence. This day I searched the house high and low and the only door that was left was the bathroom door which was closed and I thought to myself surely not. But even as I opened the door, there was nothing then as I turned to face the open shower door I was showered with peals of laughter. There Elijah was happy as he ever was, he was found. Beaming ear to ear sitting in the bottom of the shower and now splashing in the surface water that had accumulated on the bottom of the shower. This is the Elijah, I long to find or long that he might find me. I know that in this life this is not to be but I can’t help dreaming of it anyway.

It was in this dream that I found myself recently on the afternoon if Francesca’s birthday party. We had played mini golf with 9 nine of here friends at a place across the other side of town. I guess I was busy helping the kids and organising the food and helping with games that I didn’t notice Elijah’s absence. It was only when we got home and I laid down on the sofa for a wee rest, I looked up to where we have a large picture of Elijah on the wall. The realisation that although he is always with us he wasn’t with us to celebrate Francesca’s birthday, to get under the feet of the other kids, although I am sure he would be walking now, even if aided, to help rip off wrapping paper. That reminds me of how keen Francesca has always been keen to help Elijah to open any birthday or Christmas present, rather to rip the paper off. Francesca did help for the first 18 months, until Elijah discovered the elation of doing this himself and taking more pleasure in playing with the wrapping paper than sometimes he initially did with the contents of the paper. As I was laid out taking my rest, I was half expecting Elijah to appear and grab onto my shirt and then with his strong upper body and arms which he developed and the sheer determination and strength would pull himself up onto my chest, with all the smiles and giggles accompanying. The warm salty tear began to form and find themselves down across my temples and into my hairline. I was overwhelmed by both the feeling of immense love and at the same time grief and tremendous loss. It was one of those feelings that you don’t think you can contain or if it continued you couldn’t survive. I am reminded once again that “grief is the price we pay for having loved”. I whispered to Julie through my tightened gut “somedays I just want Elijah back” Even for a the shortest of times, even with seizures and other physical challenges and yet I know there have been many other times of coughs and colds in our house since the one that pushed his temperature, triggered the onset of seizures and ultimately cause the devastating damage to his body. I have to remind myself that if Elijah had survived the seizure in August he may very well have faced them up to a half a dozen times since and perhaps his body, the body of a little boy would not have been able to cope with the assaults. I have to remind myself that we all have live in frail and weak human bodies, and that the Lord who is the giver of life knows what our bodies can and can’t cope with and that the days of all our lives are “written in his book before even one of them came to be”. Knowing this life is a preparation for that which is to come. The Scripture says “no eye has seen, no ear heard nor has it entered into the heart of man what God has prepared for those who love him. I know that Elijah is sharing in this ahead of me and forms again what the Bible calls a great cloud of witnesses that cheer on those who are still on the journey. It is this faith, the faith that Elijah shared that keeps me sane and also give Elijah’s all too short life meaning.

It can be easy to focus on what might have been for Elijah and mourn what might have been or so say it’s unfair his life was so short. The challenge is to look at his short life and to see what indeed he did do and achieve and the lives of people that he did touch, he did and his story continues to touch many people and this blog is one way that he continues to do that. On that vein I was recently in touch with a family of Cedric – http://celticangel.blogspot.com. There were things that I learned about Cedric that reminded me of Elijah and so I wrote his family. In one of the emails that I received from Cedric’s Mum she quoted something that I had written some time ago on this blog "I don't ask why anymore - it only leads to despair and consumes emotional energy - what I do know is that special parents are gifted with special kids to share their lives with"

Wow that really spoke to me when I read it. In a funny way you know that was something I needed to here. So much of energy when I first wrote this was consumed by the niggling why question and in a funny way but not to the same intensity I was having a few days recently when I know the why question different was sitting in the back of my mind. Reading this quote was the right time to be able to put the why question aside and remind myself about what I do know. I would rather struggle at time with the sovereignty of God in allow Elijah’s life to be short than be without life. Fruit of Elijah’s life and death is my personal growth and the growing of my soul to embrace and journey with the pain of my loss of him. This journey for me has allowed me to be able to reach out to some other families in pain, and on a tough journey, other families who have children with Angelman Syndrome. These have mainly been families in other countries and so I am thankful for technology that has facilitated this. I have been in touch with some of the local families although I haven’t felt that I have had energy to organise any events for the local Angelman Support Group. Let’s see what the later part of the year holds.

I was in tears as I wrote the first part of this entry this morning on board a flight from my home city of Christchurch to Auckland (1hr 20 min). I was at a Church seminar for the day and am completing this on the way home tonight. I had the opportunity to share with people as most of the folk in Auckland I had not seen since Elijah went to the Lord – so has been quite and emotional day.

Until next time Peace be with you and yours

Darren

13 June 2008
It's funny how were have ther perception that time flies, and yet everyday is still 24 hours long. I have been unwell with the flu for the last 3 weeks and it seems life a long time. I guess the days just creep up on you. A bit like today the 13th of June, it is worthy note for two reasons. Fristly it is the last day of my fortieth year on the face of the earth, and secondly because it is the 9th month anniversary of Elijah leaving us and going to the Lord.

In one way it seems like yesterday that Elijah went and at the same time if feels like ages ago Elijah @ preschool loving the textures and at the same time some vague undefined time as well.