Sunday, January 27, 2008

Yesterday was a tough day - I read a message on the Angelman Forume that I subscribe to - it was a post from a lady in Sydney Australia, - her son Matthew is 3.5 and he is in intensive care in Sydney - in an induced coma - due to seizures and she and her husband have been told that he has damage to 3/4 of his brain. This as you could imagine took me right back to August and our time in the hospital with Elijah. I could feel the pain and confusion of this lady and her family. This little boy needs and miracle and so I am asking for people to pray for this and for his family today. I have written to them by email and Fay has written back and I hope to speak to her by day's end. Please pray I have the right words for her. I know that Elijah will be praying for Matthew and his family.

Matthew has a brother who is 6 it is really weird knowing of how like our situation this is for this family
Until next time.

Thursday, January 24, 2008

Soon it will be Elijah's 4th birthday - in fact it will be on February 7th - we plan to celebrate it in style with a party and cake. I so enjoyed watching Elijah on the video on the last post of his birthday I only dug this up recently and didn't realise that Julie had taken this footage. It's great to have this in a digital format. I am thankful everyday for the electronic medium and computers and this blog and Youtube that have enabled me to share with so many of you who read this blog and send messages of encouragement and love. I have a passion to share Elijah's story and journey as I know that there are so many more people who Elijah will touch.

He inspires me everyday some days I miss him so much and the pain is intense, other days I know that he is on the Journey with me, and where he is now I one day hope to be. He helps to keep my sights heavenward.

Francesca is doing well and likes to dance for Elijah when we are at the cemetery - we visit every few days and sing and so the sorts of things that 6 year girls like to do. Francesca has seen the videos that we have shown people of Elijah and so she asked if I could do one of her as well and so I set myself the task of producing a couple of movies of Francesca pictures and some of her favourite music these are also available on the Youtube site -

Well Elijah has his first mow last week - that is with the ride on mower at the cemetery. Could see the tyre marks. I don't think I have mentioned before that topsoil and grass was laid over Elijah's plot and so we have been nurturing the grass along as the weather has been hot. I keep the watering can in the car.

Well must run tonight - I leave you with a photo of Elijah in Akaroa this time last year.

Peace until next time. - Darren

Monday, January 14, 2008

Well folks it's 2008 already and steaming through the month of January as well and as each month comes around so does the 13th of the month. That mean's that it's now been 5 months for us without Elijah. I guess it's easy to say how times flies, but it seems like and eternity and each day has it's moments. I am growing though been down most days or at least every other day or so to water Elijah's lawn at the cemetery and to talk with him. I have felt my soul grow and have been able to allow myself to journey into the pain and draw it in as well. There is an opportunity to grow and the challenge or as I feel it the burden or a passion to carry Elijah's story of love and joy to people I meet. I found myself in the Angelman Syndrome Forum Chat room recently and was able to share and enourage some folks who are on the journey of diagnosis. I was able to share my journey but also Elijah's journey as well.

Last week Julie and I were on staff for a annual youth conference called Summer Oasis and is hosted by the Christian Community we are part of. I lead the morning sessions which involved a time of reflection and I was bale to encourage and share with the youth on the Thursday morning with Elijah's story and play some clips of Elijah. I recorded the video and so was able to upload it to You tube and I would like to share it with you.

I did alot of work with videos and so was able to convert some video to clips some neat footage of Elijah and Francesca. The following is another clip of Elijah's 3rd Birthday. There are these and other clips at

What a roller coaster of a life Elijah has given me and continues to take me on, I love him more and more each day.

Thanks for coming on the Journey with me.