Tuesday, December 15, 2009

Continuation the Journey Continues.

It is at the Bellabash site - www.bellabash.com that you can here Regie's song Angels wiating on wings. I was captivated the first time I heard this trak like the eyes of a stunned possum caught in the headlights. It was a preface to a DVD presentation by Dr Ed Weber from Foundation for Angelman Syndrome Theraputics FAST which was recorded in Australia earlier in the year. I watched this introduction and was touched by the wondeful smiling photos of individuals with AS that accompanied the description of Angelman Syndrome and the work of FAST . I though it was great but was quite overwhelmed when as the credits were about to roll here was a picture of my son Elijah. Tears filled my eyes as I remembered that Meagan mum of Molly from Cairns Australia, had asked me several months ago for a photo of Elijah to use in a collage. I was very blessed to see Elijah there.

The most recent project that involved Elijah was to work with Maiddy, a member of the Board of FAST
The project was to work with Maiddy to contact other Angelman Syndrome Parents whose children had died to invite them to be partof the video project. The video was shown at the FAST Gala which was held in Chicago on Dec 4th - it was attended by Regie Ham and Colin Farrell both dads of hildren with Angelman Syndrome. It was also included on a DVD given to all those who attended the Gala which raised funds for Angelman Syndrome Research. Parents photos of their children to be honoured at the end of the video a number of families did and so this was wonderful to see this come together. I hope to be soon be able to post a link to th video presentation

More to come.... Peace be with you and Yours Darren and Elijah

Thursday, October 22, 2009

Elijah's Legacy - The Journey Continues

I have been working on so many things since I last posted. I was blessed to be able to share the the times of remembering of Elijah with the videos of the last post. Many people wrote me and were touched by the physical farewell part of the Journey for Elijah. Indeed it is my priviledge to share that part of the Journey. You this blog has always been a raw one and many people have journeyed with us and so that's a glimpse. I hope you like some of the remodelling that I have done on the blog new front image andalso tried to get the blogs on the side sorted and updated as well. I have been working on a number of projects mostly Angelman Syndrome related and all inspired by the journey with Elijahan most of them online.

Before I do let me tell you also another person that has inspired me both directly and indirectly - and this is a link to his latest post on his blog - Bella Bash 09 - speaks volumes about AS - this person is Regie Hamm -
American Idol Songwriter winner 2008 with Time of My Life sung by David Cook, he isalsoa dad toIsabella who has Angelman Syndrome - I am inspired by his drive and passion for awareness and raising $$$ to support research.

To be continued....

Tuesday, August 18, 2009

It is well overdue that I posted. Last week as a family we spent special time remembering Elijah on the 2nd annivesary of returning him to the Lord.

One of the things that i have ound challenging is that other families withchidlren with Angelman Synrdome often have update and photos and videos to share of their children's progress and activities, but with Elijah no longer alive in the body I am unable to do so and so I decide that it was fitting that I commemorate elijah's annivesarywith a series of video clips. I was able to share these on my facebook account and also on a Facebook group that I have set up - Fans of Elijah.

Here are links to the videos I put together.

And the latest is me changing Elijah - a month before he died

A number of people have commented to me as comments or by email etc about strength and the journey and questions like I don't know how you manage to continue to share. I would like to share two passages from the Bible that give me hope and courage and bring meaning to the Journey, the pain and the suffering

The first is from the bookof Sirah 2: 1-11 - I read this as a Mass reading on 24th of February this year a could of weeks after Elijah's 5th birthday

Sir 2:1-11

My son, when you come to serve the LORD, stand in justice and fear,
prepare yourself for trials.
Be sincere of heart and steadfast, incline your ear and receive the word of understanding,
undisturbed in time of adversity.
Wait on God, with patience, cling to him, forsake him not;
thus will you be wise in all your ways.
Accept whatever befalls you,
when sorrowful, be steadfast,
and in crushing misfortune be patient;
For in fire gold and silver are tested,
and worthy people in the crucible of humiliation.
Trust God and God will help you;
trust in him, and he will direct your way;
keep his fear and grow old therein.

You who fear the LORD, wait for his mercy,
turn not away lest you fall.
You who fear the LORD, trust him,
and your reward will not be lost.
You who fear the LORD, hope for good things,
for lasting joy and mercy.
You who fear the LORD, love him,
and your hearts will be enlightened.

Study the generations long past and understand;
has anyone hoped in the LORD and been disappointed?
Has anyone persevered in his commandments and been forsaken?
has anyone called upon him and been rebuffed?
Compassionate and merciful is the LORD;
he forgives sins, he saves in time of trouble
and he is a protector to all who seek him in truth.

The second is from the New Testament Letter from James - Chapter 1: 2 -12
Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing. But if any of you lacks wisdom, let him ask of God, who gives to all generously and without reproach, and it will be given to him But he must ask in faith without any doubting, for the one who doubts is like the surf of the sea, driven and tossed by the wind. For that man ought not to expect that he will receive anything from the Lord, being a double-minded man, unstable in all his ways. But the brother of humble circumstances is to glory in his high position; and the rich man is to glory in his humiliation, because like flowering grass he will pass away. For the sun rises with a scorching wind and withers the grass; and its flower falls off and the beauty of its appearance is destroyed; so too the rich man in the midst of his pursuits will fade away. Blessed is a man who perseveres under trial; for once he has been approved, he will receive the crown of life which the Lord has promised to those who love Him.


Peace be with you all of you who read this and your families


Monday, June 22, 2009

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.

Monday, June 15, 2009

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

Sunday, April 05, 2009

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

Sunday, February 15, 2009

"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 GethsemaneFather 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



Sunday, January 18, 2009

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