Life is full of seasons and I guess this is one of these seasons for me, on the Journey of life. Down here in the Southern Hemisphere it's been Fall(Autumn) and is now Winter. Since Easter I feel like I have been in a bit of a trough, I hadn't felt so excited about alot of things. Things have been pretty ok but emotionally not alot of movement - not high but at the same time not low low. At the beginning of May I started to take stock of this. I started to do some more reading about where I felt I was. I began to read about loss, bereavement, depression. Did I think I was depressed ? well maybe. Did I think I needed to see the doctor ? Maybe, did I think I needed to take the path of medication again like I did in the latter part of last year? not sure that I did. Was how I was feeling connected to grief and bereavement - re the loss of Elijah - I am pretty sure it was. In April and in May I had given presentations about Angelman Syndrome to teacher aides and teachers at a special needs school here in Christchurch along with another mum whose son Daniel also has Angelman Syndrome. http://www.allenvale.school.nz/syndeo/ Had this amplified my loss? perhaps it had.

I did find myself asking questions like - do I still want to be part of working with families whose children's lives are impacted by Angelman Syndrome ? Did I still want to try and attend the ASF
conference in Orlando at the end of July? was was my motivation for doing so? was my life always going to be a journey of dealing with the grief of the loss of Elijah ?

As I began to read - there were some things that I could relate to - things like -

In Loss and Change (1986), Peter Marris wrote "The fundamental crisis of bereavement arises not from the loss of other but from the loss of self." When a child dies the "loss of self" is amplified.

Wow this resonated with me like a ton of bricks - I do recall reading in another book about loss of self in the context of amputation - something that is there no more and yet like amputees - there are feelings and experience of a phantom limb.

I know the basics - I am male - now 42, married to Julie, father to Francesca, work for Gen-ilive in Burwood, Christchurch etc. I now faced the questions of who am I to Elijah and who is he to me. I am Elijah's Dad, but he is not physically with me and so in a way I am not, but yet I still am. How do include him in conversations when people say do you have children ? I felt the need to read and understand something of other people's experience of losing their children, hoping it may may contribute to my understanding of mine.

I found http://www.athealth.com/consumer/disorders/parentalgrief.html full of insights and quote and experience which mirrored my own

Parental grief is boundless. It touches every aspect of [a] parent's being...When a baby dies, parents grieve for the rest of their lives. Their grief becomes part of them...As time passes, parents come to appreciate that grief is [their] link to the child, [their] grief keeps [them] connected to the child. - ARNOLD AND GEMMA, IN CORR ET AL. 1996, 50-51

As part of the grieving process, bereaved parents experience ups and downs and a literal roller coaster of emotions. For these parents, a personal history includes a past with the child and a present and future without the child. For most grieving parents, it is vitally important to verbalize the pain, to talk about what happened, to ask questions, and puzzle aloud, sometimes over and over.

There is no relationship like that of parent and child. It is unique and special...The bond between parent and child is so powerful that its strength endures time, distance, and strife. No loss is as significant as the loss of a child...On the death of a child, a parent feels less than whole. - ARNOLD AND GEMMA 1994, 25-27

Grieving parents should learn to be compassionate, gentle, and patient with themselves and each other. Grief is an emotionally devastating experience; grief is work and demands much patience, understanding, effort, and energy.

I found that these plus a whole bunch of other writings were putting into words what my journey has been like - especially how physically exhausting this journey can be at times.

Did this just flick the switch for me and things were suddenly different? No but it did help give me perspective on my journey and I began to read of other parents pain and journey and I recognised in them my own. I recognised companions on journey. Some of the journeys had points of familiarity others not. Not that I thought I as the only one on the jouney of grieving my son Elijah, but I have come to realise that good part of this is who I now am. I recognised I was in a season of disorientation - an opportunity for orientation. All part of my growth and experience as a human being as a man and as a Dad.

To becontinued

Last year Julie and myself and Francesca watched the American Idol competition and it was as the competition was coming to an endi became aware ofthe Americn Idol Song writing competition that was also going on.

I was alerted is Facbook that in fact one of the song writers was a man who had a daughter with Angelman Syndrome. And so I listened to his song time of your life and along with many others voted to support this song. This man is song writer Regie Hamm. His song received the most votes and was recorded by David Cook the winner of the 2008 American Idol. This song has gone on to become Platinum - the song was even featured at the 2008 Olympic Games. Regie has recently releaseda video clip - Full Circle which talks about the background to the song. Time of my life is a song that talks about his journey with his daugher Isabella and his family, it is a song from the heart. Here is a clip of that and also David Cook singing the song. Listen to closely to the words or the song they certainly resonated with in my Journey with Elijah and I am sure it will resonate with the lives of other AS Families. I have become friends with Regie and am blessed and inspired with his support of the Foundation for Angelman Syndrome Theraputics - www.cureangelman.org Listen enjoy and be inspired by Time of my Life.





Here is the song and the lyrics




Enjoy - peace be with you
Darren