Today has been a tough day, tonight I cried alot. I rang the tax department today to let them know that Elijah had died. It was the last of the organisations that I had to contact and I had been putting it of as this was the last people I had to contact officially.

I just felt a need tonight to see Elijah and so went through a bunch of video tapes with him on them even the ones with seizure activity. Just to see my son and so wanted just to reach into the video and hug him because I misss him so much. The tears welled up and I really felt like someone had reached down inside me and ripped my guts out such was the pain.

Last weekend was a special childrens Christmas party - for kids with disabilities and terminal illness etc, Elijah had been the last two years. I went with him last year. I met up with another dad whose son has Angelman Syndrome and so Markus and I and Elijah and Tobias all had a great time together. This year I went remembering Elijah to give time to help and ended up facepainting. Something I have never done before. I saw Markus and Tobias and felt a little naked without Elijah, but painted with the help of his markus a big red heart on Tobias' cheek, I did christmas trees and rainbows and snakes and swords, and bumble bees etc etc. I came away a little sad, but felt good about about taking a few hours to paint faces to put a smile of kids faces, something Elijah always did so well, without trying. The following are picture from Last years Special Children's Christmas party

Elijah and some of the entertainers

Elijah's Only Facepainting Elijah with a gift he received

Elijah and his Angelman Mate Tobias sharing bananas

They have fruit and food, facepainting, entertainment, fire engine, police, bouncy castles etc and also the Santa Cave with fabulous gifts of all the children, provided by sponsors. It's a great event, I will be booking it in my diary for 2008.

Till next time - peace be to you and yours

Darren

Hi All,

Peace be with you and yours. They life goes fast when you're having fun, well can't say the last three months have been fun but most certainly they have gone fast. Today is 3 months since Elijah went to the Lord. It's be a day of vivid memories. Today Francesca has been home from school because she is unwell - bad loose cough and sniffling nose, and high temperature this was how Francesca was the week before Elijah, in fact we all had some of this and it was on the Wednesday that Elijah began to have the same symptoms which caused his temperature to rise and the seizures to come on so massively. I reflected to Julie that if Elijah has survived the seizures in August, he may have very well been facing the same thing this week and the possibility of seizures, and who know from there, it has been very hot in the city today - which was another thing that Elijah's body didn't tolerate very well is the hot temperature. I guess part of this was his inability to be able to regulate his own body temperature. I can understand that Elijah would have always had the challenges that seizures face and a little boys body is only so strong to regularly suffer such assaults.

We sat and watched the DVD of the music and videos played at Elijah's vigil this morning and cried and had a prayer together - boy I miss my son. I didn't go to work today but worked from home. This was a blessing - it was a very melancholic day - thinking about how the day unfolded for us 3 months ago. It was late on Sunday night that we learnt the full extent of the damage to Elijah's body, severe and irreparable liver damage - severe kidney damage and the CT scan of his brain show severe and massive brain damage we saw images of the CT scan on monitors and it was a shock to show that the highlighted areas were not the normal brain tissue but the damaged tissue and this was at every level, this was caused by the length of the seizures and the lack of oxygen, it also meant that the muscle tissue that had been starved of oxygen during the long seizures had begun to waste away and break down - this was irreversible and a contributor to the liver damage. This was like being smacked in the face with a brick, when we went into the room i knew that for Julie I had to bring in our close friend Andrea. Our specialist told us that that Elijah's condition if survivable would mean he had no motor function and would literally be able to do nothing - however after consulting specialist did not believe that his condition was survivable and that he was unlikely to live any more that 24 - 36 hours. His liver would stop functioning and his kidneys would completely shut down, which they had already begun to do. We were told that the only thing that would continue to keep him alive was the ventilator, his body would shut down, first liver then kidneys and then fairly soon after that the levels of bad stuff in his blood would cause his heart to stop. They would continue to make him comfortable, and presented us with the possibility of turning off Elijah's ventilator or waiting for him to pass away. By this time his body was already quite swollen because of the amount of fluid in his body to help keep him hydrated and his blood pressure down. Julie and I decided that we would gather the family and friends and give people and opportunity to say their goodbyes to Elijah and we made the decision we would turn off his ventilator later the following afternoon - by now it was close to midnight. I will come back and share some more about the day and some of the wonderful things that happened in the ensuing hours - sufficient to say that we sent for Francesca, as there was a possibility Elijah may not have lived through the night and i ran my immediate family to tell them the news and dad and his wife and my mum left almost immediately to come to Christchurch - 5 hour drive and my sister and nephews at 7am and my sister was able to book a flight to come from Australia.

It was a day of grace - a day of letting go - all of the family arrived and close friends had come to visit with us and Elijah throughout the day to say their goodbyes, we had prayers together as a family with our parish priest and then Julie, Francesca and myself together with our close friends Bernard Andrea, our parish priest were together in Elijah's room with the medical staff as over 40 minutes they slowly turned down Elijah's ventilator - Elijah was in lap as he is in the photo right here - I guess the biggest thing for us was that we thought that Elijah might struggle to breath, but this was not the case - the staff had turned off the monitoring equipment and peacefully as we prayed the machine was switched completely off and Elijah went to his Lord and we let him go. As I will share later it was not hard to let him go as we knew that for Elijah his life had not ended by rather changed, but none the let the physical separation is hard - very hard. While I held him they removed the tape from his mouth and the ventilator tube and cleaned around his mouth. I stood and hugged my son like I had never done before. Only this time I had to wrap his arms around my shoulder because he couldn't do it himself anymore like he used to so many many times before - I held him tighter than I ever had before and kissed him and held him - in that moment - I had a maternal sense of the Mary the mother of Jesus when Jesus was taken down from the cross - picture in the famous Pieta sculpture and the words that I heard in head were " I too held the lifeless body of my son in my arms" What a words of comfort - a knowing that I was not the only to have experienced the letting go. Those few moments whilst the family gathered again were for me a moment when time stood still and it seemed so long. I held him as we prayed together again and we prepared Elijah to be looked after by the hospital staff before my friend the funeral director came to collect him the following day. After our prayers, I laid him on the bed, this time he was different, but none the less hard to leave him but knowing his body was in good hands. Julie had brought in some of his own clothes to wear and that made all the difference - more the Elijah that we knew that the little boy in a nappies with tubes and iv lines etc. For me I am sure that I know the point in time when the irreversible damage was done in my spirit there is just a sense that in retrospect I knew - I think from that time he was waiting to go. Today I sat in his room at home and held his blanky suit close to me at 5:40pm and felt like I did as I held him in the ICU 3 months ago and I wept, for the first time since then it was like I felt him touch. I know that the Lord had plan and purpose for Elijah's life and that is far from finished and i know that the Lord's plan and purpose for our life as a family is far from finished as well and journey of grief at the loss of Elijah is part of the journey.

Thanks for sharing the journey with me.

Pain nourishes courage. You can't be brave if you've only had wonderful things happen to you. - Mary Tyler Moore