In between sharing about the journey that I have been on let me share an exciting story from some friends of mine. They are the Fore Family and they live in the US and I have been in touch with Stephanie the mom for a few years now. They have a son Brady who has Angelman Syndrome - like Elijah.

The full story can be read at Brady's blog - http://www.sweetsweetangels.blogspot.com/ or at http://www.marcelcairo.com/BigHappyTent/Angels.html


In short the Fore family were on holiday - it had been raining - Brady loving water when it stopped couldn't resist playing in the puddles - que the kids of Marcel Cairo who met Brady in the puddle and both family enjoyed a time of puddle splashing together, the parents met and Brady's parent shared something about Angelman Syndrome.

Marcel shares "

Though our time with Brady and his family was short, it was one of those life-changing moments you hear about on Oprah, and maybe not for the reasons you would assume. Sure, Brady and his syndrome elicit an instant empathy, but I had an epiphany, not just empathy.

The epiphany I experienced was not instant, nor was it sought. It basically crept up on me, and then on my wife, Leigh. When we left the campground in Florida, there were no long protracted goodbyes, no fanfare, no exchange of phone numbers, no promises, only a simple, “look us up on the web wen you get home and I hope you stay in touch,” from Brady’s mom, Stephanie.

Two weeks later, when I started making the movie of our camping trip and saw the footage of my kids playing with Brady, all those joyous feelings returned, and that’s when everything just came together in my head.

Camping isn’t just fun, it’s therapeutic. For Angelman kids and their families, camping is also an escape from the limitations of the syndrome. Angelman kids love to laugh, make noise, throw things, horse around, play in water and socialize. Parents of Angelman kids want to give their angels the freedom to do all those things daily, but without wrecking the whole house or turning the neighborhood upside down."

And from this "Big Happy Tent" was borne - check out this work - a foundation to help AS families go camping.

As I reflected on this wonderful encounter - I recognised an ability our kids have to enjoy the simple things and take delight in sharing the simple things with others I am learning to take time to enjoy the simple things.

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

"It seems like it's the season for birthdays and we are no exception we celebrated Elijah's 5th birthday last Saturday, Julie Francesca and I along with out close friends spent some time down at the cemetery with Elijah -it was a nice time to talk and share and reflect and pray.

We then came back to our house for Roast Pork veges etc and yummy custard and almond birthdaycake that I made. We finished the evening with watching some videos of Elijah and praying -I opened my first ever bottle of mead - which went down really well.

Lots of people wrote me/us and offered prayer and good thoughts and encouragements - thanks to all of you who also secretly accompany us on the journey. - wonderful words like "Elijah definately "lives on" through your love" - "I know your parents miss you very much.Through there love even those of us who did not have the privilage of knowing you in person know you in spirit." - "I can only imagine how beautiful "Happy Birthday" is sung by the angels in heaven"

I wanted to share will you all something I wrote in response to one of the emails some may have read some of this before - but this is is thejourney of how I get through

There is so so much to be thankful for this day – sure it had it’s time of tear but also it’s times of tremendous – joy – how proud I am of my son.

It’s three things most of all that have helped me and given me and our family courage on the journey

First is faith, outside of the context of faith I so would have struggled with this journey And with Elijah’s death and yet I know that God walks close, not because I have chosen to be close but because He has chosen to be close to me, you know in the hours before Elijah’s death was walking up and down outside the hospital and I was praying like Jesus in the Garden of Gethsemane – Father if possible take this cup from me “I know that you keep the world spinning and nothing happens apart from you”(my words) I know you have the power to restore all bodily function to Elijah and what a testimony and witness that would be– but not my will but yours be done – not that it was God that took Elijah’s life – but rather I give up wanted I want to happen and allow whatever you permit to happen. I felt a profound pain in my guts and I said Father God what is this that I feel – and I heard a voice – audible – or even speaking in my head that said “Darren, I know your pain, and your anguish, I too watched my only son die, so that he might yet rise again to glory” This was the voice of a loving Father who KNEW what I was journeying through and KNEW my pain, and KNEW my journey and journeyed with me in the pain. I said “ Lord though you slay me yet will I praise you" – the words from the biblical old testament prophet and I also declared – "Lord you give and Lord you take away Blessed be your name ! "I would rather know God and struggle with issues of his Sovereignty and why he allows things to happen than not be in relationship – the alternative is darkness and despair.

The second is Hope, I know because of my relationship with God and because of Elijah’s’ relationship with God his life has not changed, it has ended, whilst his bodily life is now ended, He lives on in eternity with God, and prays for me and for others and enjoys the presence of God all the time. From that place I have a powerful intercessor and someone who encourages Me and inspires me everyday to live life. There are some words from a document about hope that Pope Benedict XVI wrote in 2008 which deeply impacted me about hope he wrote ……

"Man needs God, otherwise he remains without hope … a personal God governs the stars…here we have no lasting city, but we week the city which is to come Heb 13:14 Heaven is not empty, God is the foundation of hope; not any god but the God who has a human face, It is not the laws of matter and of evolution that have the final say, but reason will love: a person. Faith draws the future into the present, so that it is no longer simply a not yet….. This real life, towards which we try to reach out again and again, is linked to a lived union with “people” …It presupposes that we escape from the prison of our “I”…… the fact that his future exists change the present……:the night is almost over, the day is at hand (Romans 13:12)….. All of these words are wonderfully captured in the video clip here from you tube

The words to the music at the end are – I know that the night must end and that the sun will rise repeated…

…some days in the really dark times and sill now in the dark times I watched this clip or listened to the audio over and over again – to remind myself that there is hope I know that the dark will flee and that the sun will shine (there was one day listened to nothing but this all day – reminding myself of truth. I look forward to embracing my son and in fact I long for that day like a heartache, such is also my longing for not so much this life but lift my eyes to the life yet to come, such that no eye has ever seen nor has any ear heard nor has it ever entered into the heart of man, the things that God has prepared for those who love him. I live with HOPE.

The third is and you may have guessed it already and that is Love. Knowing that God loves me and shows me and reminds me everyday of the big ways and the small ways He loves me – in Jesus or in the canvas of the universe with which he places that stars or paints me a sunset, and stirs my spirit. I know love through the actions of my wife Julie and my daughter Francesca, I know and experience love from those who accompany me on this Journey of pain suffering, and anguish, through the darkness and into the light into the darkness, those who have prayed and asked the Lord to pour out his grace on me. I know love from the little note of encouragement and emails I received specially in response to blog entries, or just note from people who say I don’t know what to say – but I wanted to email you and tell you that anyway (he chuckles) the love I experience like yourself who journey with me, I am truly grateful for how the Father (God) arranged for me to receive hugs from little or growing boys when I need them and that sometimes I find myself betwixt by other children angelman syndrome their smile and their vocalisations – the language that I understand, which moves my heart – I might not understand with my head, but I have given up trying.

So with the Love surrounding my Hope and my Faith, Journey on each day, after each day.

Peace be with you and yours

Darren

.

December was another milestone in the journey, following a number of months of considering we agreed on the final design of Elijah's headstone. It was created and installed at Memorial Park Cemetery in Linwood Christchurch on December 14 2008. I have included some photos below.



By way of explanation of the names on the top of the headstone - Mister Mister is the name that Julie liked to call Elijah and Elijie is the favourite name Francesca had and still has for Elijah.

Some of you may recognise or have seen this picture before and it was taken at Gethsemane Garden's here in Christchurch. It is one of my favorite photos of my son. It is in fact a very candid photo and not posed at all I happened to have the camera on hand at the right moment. Elijah and I had been meandering through the gardens. It was a Sunday and the was a dusting of Dew on the leafs. This was something that added to the fascination of this particular morning. We had walked up a narrow path and have passed a number of over hanging plants which as he was like to do, Elijah reached out to grab and smile and laugh with delight at the sensory pleasure he derive from having the leaves pass through his hands and a bonus on this particular morning was he addition of moisture. Being a little boy with Angelman Syndrome, he exhibited classic signs of a fascination with water, and so the dew caused his experience to be enhanced - water, water, water. We stopped for a minute a the top of the garden and I put the brakes on the stroller, firstly to rest a little from having climbed he incline, and he second bonus was to admire the stunning views out to he ocean and up the coast. It was at this moment initially withe intention of capturing this vista, I armed myself with the camera. It was in his short space of time hat Elijah turned towards me and I captured his image. Soon after he camera was reholstered that I might be prepared for a yet another of his escape attempts from the confines of the stroller. A gaze of a son towards his Dad and smiling with delight, that delight that appeared on his face with no respect for day or night throughout his life. This gaze was only darkened when he was unhappy or frustrated but not for long, or when he was in pain, or his body was wrenched by seizures. A loving gaze and smile that conveyed love and delight, joy and peace and dare I say fulfilment. A gaze of a son to his mother in only a way that she could understand accompanied by "his noise" and attempts at vocalisation that Julie so often echoed back to him - their language mister mister and his mum. The gaze of affection for his sister and the gentle laughter and the played with him as they played rough and tumble on the lounge floor, a smile and private laughter even when Francesca, admonished, remonstrated him out of love of course. A gaze of love of a son to his Dad, saying" look at me Dad" "aren't you proud of me," "I love you," often followed by outstretched arms to embrace to his dad. A deep gaze that spoke deep into my being. His smile was only reshaped only, his voice hushed only , his laughter quieted only and his body stilled only by his entering into the sleep of eternal life.

Though I do not see him now, for a short time, the pain of his absence at first crashed upon my shore in what seemed to be a tumult, incessant, without end, again and again. As the waves have come and gone upon my shore, his now presence now whispers to me, even at times in my pain in a gentle waves after reminding me of his love and in turn reminding me of my love for him, which transcends time. Reminding me again and again day after day night after night that he journeys with me. Whilst parted we remain yet a breath apart. Whilst his body is taken from my sight and returned to the earth from which it came, I know where his mortal frame lies because it is where I put it, and I have a connection to that place. I have a connection to another place, a city that has no beginning and has no end, a place where pain and sorrow cease, a place that no thought of which can never entertained by my mind let alone a notion has entered into my heart. A city of which Elijah is eternally a citizen, of which I am called to be as well. It is from this vantage point he with saints who have gone before, cheer me on each day and inspire me to live my life everyday, who compels me to share our story, our journey, his mystert which is far from over, and which you who are reading this entry are also caught up into.

I had not intended to write as much as I have - but this is what is on my heart to share with you on the journey tonight. I write from holiday in Blenheim, New Zealand.

May peace be with you and yours
Darren, the Sojourner

The weekend before last I had the opportunity again the attend the Radio Network Sepcial Children's Christmas party - http://www.sccpnz.co.nz/index.html

It has a number of sponsors and provides a Christmas celebration with for kids with termial illneses and special needs. The frist year Julie took Elijah and the second year I took Elijah and we kept company with Tobias and his Dad. Tobias is another 5 year old with Angelman Syndrome. We had a great time with face painting lots of fruit and entertainment, and a trip through the toy cave to meet Santa. We also received some fabulous gifts - that were great for Elijah. After Elijah died last year I decided I wanted to give something back and so went an voluteered time and spent a number of hours facepainting.

This year I was able to get some tickets for some local families and went again to volunteer help. I was able to meet a few families that I know - Tobias and his Dad and Daniel and his Mum. I spent time in the toy cave helping take children through to get their gifts and see Santa. And I decided that this year there would be a was of taking Elijah with me and also putting out the Angelman Syndrome Message and so as you can see from this photo I went and had Elijah's photo name and www.angelmansyndrome.org.nz put on a T shirt

I got to meet some great people and some fabulous kids as well - ilost count of the number of children I took through the toy cave. I met a little boy Isaac who was born with only half a heart and was able to share with his mum as well walked through the cave.

there were a numbe of children who pointed to the pictureof elijah onmy Tee shirt and smiled and wante to know who he was.

I was also able to share Elijah's story with quite a few people.

I really felt like Elijah had been at the christmas party with me.





This is Elijah's friend Tobias all glowing





here is a pic of them both from two years ago.

I feels like ages since I wrote and in fact is has been six weeks. I had the intention to post several time before now,but jus haven't quite managed to do so.

The firs things i would like to share with you is a video clips Elijah tha wa used at the family vigil we held the night before Elijah's funeral. I was put together by my best mate. It is one of three clips that were shown and i have been working on trying to extract the other two from a DVD. I have posted it on the Youtube site.





It's been quite an emotional journey these last couple of months. In September I got to the point where my brain wasn't functioning well and I noticed this most at work and I had not been sleeping so well either - was just not myself. . I went to the Doctor and ended up taking two weeks off work. I also went to see a counsellor for 3 sessions. In all I was off work for two weeks - which was great and did me a world of good. At the counsellor we recognised several things that had contributed to how I ws feeling. One of these was accumulated stress from the time prior to Elijah's death that was still draining from system, the sheer physical impact that reults from greiving Elijah's passing, the recent anniversary in August, the strained and sitant relationship I have with my Dad and the pressure of work as well. I spent good portions of the counselling talking about Elijah and crying. Funny how going and finding that the defences were down and i just opened up and she listened and shared reflections back to me as well. It was helpful to see that I was still in the midst of the pain of the grief and loss of Elijah. I lerned that in darkensss there is rest as well as turmoil; and pain. I have been blessed to have been touched by a number of angels recently there are some little boys out there that smile at me like Elijah smiled and one last weekend that hugged me like Elijah did. I was comforted by Tobias and his hug and wiggliness and desire to pull off my glasses, ministered to my soul on my journey.

I found myself drawn to Elijah's toys on after lunch and before going to a church meeting. Just sitting hold one of his shoes, and then gently playing with some of his favorite toys. I sat in the conservatory with the sun streaming through and Francesca whispered to me "I wish Elijah was still here ! I wish he was too I replied and we both played for some time. Here are some of Elijah's favorite toys. Pictures still to be uploaded - and this post continued

Back shortly
Peace
Darren