Elijah - an Angel Story

New Blog Site

2011-06-14T12:06:00.000+12:00

Hi Followers and readers - I have moved the continuing of this blog to the new following Site

http://www.elijahangel.wordpress.com/

Please visit and subsribe at the new site.

Dancing in the Rain

2010-10-04T23:45:00.001+13:00

"Life is now about waiting for the storms to pass but learning to dance in the rain."

I am sure I might have heard this saying previously, but it had it's most impact was on the order of service for the Tangi of the wife of a friend earlier in the year. It speaks of the Journey and also has been a mantra for me to keep going on the Journey rather than waiting for things to pass, but even to find joy in the midst of the pain. I know that that joy and pain seem to be diametrically opposed and yet it is possible to experience it.

In planning for the Angelman Syndrome conference that took place here in Christchurch this past weekend, the first thought for a theme came to mind and thus it was

And so it was - what a wonderful conference working with another family here in Christchurch - and to see it come to pass. I was able to secure Professor Chris Oliver from the UK to be the keynote speaker. Following his wonderful presentation about Challenging Behaviour in Angelman Sydnrome - which included work that he and other staff are doing on recognising the stress and pressure on parents with AS, my contribution to the conference was mentioned and I was presented with a gift - pic to come which is a glass koru - (the koru is the Maori name given to the new unfurling fern fron and symbolises new life, growth, strength and peace)

I got up to accept it and speak briefly and dissolved into tear for a few minutes - I was able to honour Elijah in this public context and acknowledge it is my pleasure to spend my energy - to invest in his legacy. I know there were tears in more than a few people's eyes and was encouraged by the number of people that spoke to me about it and how they are inspired by our Journey.

It was great to meet with both professionals and families to continue to share the Journey. Thanks Elijah - you rock my son.

Times flies

2010-09-20T22:50:00.000+12:00

I have just realised that it's the spring has sprung and it's September and life in Christchurch will not quite be the same. I have been meaning to post for several weeks now. 13th of August was the third anniversary of Elijah, returning to the Lord. We marked the day as a family took time out and spent some time at his grave at the cemetery. I purposely took time off the day before as well so I could work on a Elijah related project for this anniversary. I had been working on it for a while and it was going to take some time to complete in time.

The project was to get the video footage of Elijah's Family Vigil and Funeral Mass online and in segments that folks could watch One of the reasons I wanted to share this was that in the three years mostly due to Elijah, I have met and been accompanied on the Journey by people who walk with me from all over the world and have gotten to know Elijah and the Humphries family since then, Those of you who read this blog know that I have shared things in a raw way and without pretense and so here I am sharing with you an intimate part of the Journey with Elijah.

I have created two pages and invite you to share on the Journey

The First if the Vigil Footage

http://humphriesnz.wordpress.com/vigil/

The Second it the Funeral Mass and Cemetery - lots of people did come to the cemetery with us at our open invitation and it was just right that people helped us with that part of the Journey as well

http://humphriesnz.wordpress.com/35-2/

With this post - I also want to mark the passing of our Parish Priest - Fr Miles O'Malley - he is in the funeral footage and was with us in a special was in the last hours of Elijah's "earthly" life - Go well Miles

I also want to mark the passing of our Parish Church - St Pauls in Dallington due to a 7.1 earthquake two weeks ago

A Hero

2010-08-05T23:30:00.000+12:00

Facebook has provided me with and continues to provide me with many opportunities to connect with families across the world some from the early days following Elijah's diagnosis who I have connected with on Facebook. As much as it has been me making the connections - Elijah has been at the forefront of it as well. His smile and his demeanour have touched an spoken to many people. Our Journey speaks in many ways to those we connect with. Many of those neither of us will met this side of eternity. One of these people the mother of a boy Moses shared something this week which spoke volumes to me, stirred my spirit and shed some light on Journey

There is a passage in Lord of the Rings that has always stuck with me. A hero, a great king, dies and Tolkien writes… “When he died a Great Beauty was revealed in him so that all who looked on him saw that the Grace of his youth, the Valor of his full manhood, and the Wisdom & Majesty of his age were all blended together so that he became an image of Splendor.

This reminded me of Elijah - I think there is something about his countenance since he died that attracts people. I continue to be inspired to share the rawness of the Journey. I know there is something about sharing the rawness and with vulnerability that is attractive. I know it give people hope for the Journey, it inspires, it encourages.

How can I not share ? I am compelled to ! Elijah cheers me on from the grandstand - come on Dad - go for it Dad, keeping going Dad. And so I do

As proud as he is of me - I am of him

In My Dreams

2010-05-27T23:45:00.003+12:00

I dreamt of my Elijah last night - clear and vivid. He was his age now (6) he was tall and he looked into me, deeply. He smiled he hugged me. He didn't say anything to me but he smiled and those of you who are reading this who are parents of children with Angelman Syndrome know what what I mean when you know they are talking to you

Journeying with the Pain - Goldie dies

2010-05-08T14:41:00.000+12:00

All to often in response to situations of grief it is said "Time will heal!" I also remember this being mentioned to me either in a direct or indirect way. I have also read in Disguised by Grace - How the soul grows through loss that the soul has capacity to grow through loss. Not that this means that the acuteness of the pain ever of loss ever goes away, but there is a capacity within each of us to journey with it. A friend of mine wrote a poem recently that spoke about grief and the persona it has. Most often it journeys with me unseen. Then at times without any notice or hint, it appears and presents itself with all the fierceness it was. Searing cutting pain which reaches into the depths of your being and does something I do not have the words to describe. This experience is not merely a spiritual or emotional encounter but also very physical.

About six weeks ago my Dad came to live in Christchurch and brought with him his budgie Goldie. Dad gave Goldie to Francesca to be her bird as he was unable to have Goldie at the rest home the way he would have liked and so he came to live with us. Immediately Francesca and they became the best of friends and they spent time together every day. In short the three of us had become accustomed to having Goldie's company.
This morning when Francesca went to say good morning to Goldie she found him lying dead on the floor of his cage. She was distraught, and I took time to comfort her. I found myself overwhelmed by the loss. What I was acutely aware of is that is was in the house here that I last engaged Elijah when he was alive. The death of Goldie like the opening of a door that my pain and the grief I might journey with to come to visit. Like the surf crashing relentlessly on the foreshore the waves came and overwhelmed me. I hurt, deep down to the core of my being, over and over in my gut in my face in my brain across my whole being a shaking. I felt the urge and still do to a degree to run and hide, to shake it off, to shed it like a skin or shell. Ah but if that were the simple answer. Rather I must face the pain journey through the darkness, press through the waves. As I face this let me share with you a poem written by a friend following the loss of her soulmate Jacky in recent months.

Darren

A poem

Behold my friends for I am grief
Look away if you must
I am not very attractive
however I can promise you will meet me again
I leave no one untouched
When I come you will not mistake me
I twist and contort all that is your reality
I'll make you feel dead in a place deep inside
lower than your heart and not quite in your stomach
I believe you may call it your gut
Your instinctual centre will numb during my stay
I'm the price that you pay for having loved so they say
And pay? Yes you will, in pain.
I will render you joyless
Make you sleepless at night
When the sun rises gloom will greet you each day
Ill make you question all that you know
And Ill drag out my stay to ensure that you are made acutely aware that
You have loved
I will over time allow you to breathe without me however
when you least expect I will appear within you again
Behold my friends for I am grief
Look away if you must
We will meet again one day.

Elijah the Smile bringer

2010-03-25T20:13:00.001+13:00

I know I have written before that Elijah's journey continues, but I ever cease to be amazed how he continues to be a people magnet. I like to wear my Elijah T shirt with my favourite picture on it and with his date of birth and death and www.angelmannetwork.com. Today at the rest home that I have moved my Dad to 7 people stopped me and asked about Elijah and Angelman syndrome. One Elderly lady told me i have courageous and brave talking about Elijah. She told me she has a daughter who is 57 who had an interlectual disability, a son who commited suicide and two toher children with the challenges of mental illness, I told her she was brave sharing with me about her life. I'm not quite sure why but often people tell me how awful it must have been tht Elijah died when he was so young, and that somehow their loss is less. As I write this I am speculating in my mind that one of the reasons is that I freely speak about Elijah and the journey and this then often gives other people permission to share their loss and their grief. Not a day goes by when Elijah is not in my conversations with people. I guess I am testimony that it is possible to journey in grief and pain and to embrace it, to journey with it and to share the hope with others. If I'm an inspiration, let it be that others share those times, the grief the loss with others that they can take courage and know that there is hope. On Rare Disease Day recently I did a fundraising campaign at my work and taked about AS and the journey and I wept and share on the phone with a number of people who had recently experienced loss close to them of someone they loved on a 2 year old - with a heart defect an the other a Mum of cancer.

I am a Pilgrim amongst Pilgrims on the Journey
Darren

Branches on the Journey

2010-02-08T23:17:00.000+13:00

As each day passes life is never the same again. new opportunities arise and present themselves - those who have gone before us forbears and children a like whisper call to us "Carpe Diem" - "Seize the day"- Gather the rosebuds while ye may - like the following scene from Dead Poets Society

What a reflection what a call to life, a call to live. I can hear Elijah say to me "seize the day Dad. seize the day". This is very reflective of these last 8 weeks. In short, my life has dramatically changed and it will never be the same again.

Part One. I received a text message on the 26th of November 2009. It was from a close brother I know from Church who lives in a in a seaside town 3 hours north of Christchurch. In the message he was asking for my assistance and sent me on some other texts outlining what he was asking me/inviting me to do. I was eager to know what the request was. I learned that it was a call from the Lord, the way of the cross. I was asked to contact a family L & M and their 10 month old daughter A. L had come to Christchurch to see the dr. She has some cancer (melanoma) removed from her body earlier in 2009, but after experiencing pain inher back and being put off by doctors in her town came to Christchurch to see and oncologist. In short she was told she had advanced cancer in her liver pancreas an other parts of her body, M and L learned that news and would I go and pray or at least make myself known as they did not have any family or extended family in Christchurch and so I said I would go and meet them and see from there. I went an met them an prayed with them and the journey began... one that would transform my life. On the second day I found myself saying "Lord I am not sure this is a call for me but, if you prompt me I will go and if I open my mouth, please fill it with words" Little did I know how much the Journey with Elijah was to have prepare me for this but I knew that he accompanied me on the Journey. It' late her in NZ and so I will need to continue.

Peace be with all readers of this blog and those whom they Love
Darren

Continuation the Journey Continues.

2009-12-15T23:20:00.000+13:00

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

Elijah's Legacy - The Journey Continues

2009-10-22T23:57:00.002+13:00

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....

2009-08-18T22:24:00.002+12:00

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 adouble-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.

HOPE SPRINGS ETERNAL

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

Darren

2009-06-22T15:26:00.003+12:00

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.

2009-06-15T13:14:00.004+12:00

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

2009-04-05T06:29:00.003+12:00

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

2009-02-15T04:18:00.006+13:00

"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

2009-01-18T23:05:00.008+13:00

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

2008-12-02T23:02:00.003+13:00

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.

2008-11-09T12:52:00.004+13:00

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

2008-09-18T21:26:00.002+12:00

One of the things that has occurred to me since I last wrote, about what I wrote is the revelation is that God is near not far and that the time or space between this world and eternity is but a thin veil. The Tiune God – Father, Son and Holy Spirit are not far away and distant but rather intimately close. Closer that you or I might realise or comprehend. In the midst of my trevail, my pain and suffering there was my God, above below and in the midst of my circumstances, in the midst of my life.

Recently I was sharing with someone and found myself reminded of a desire I voice not long after Elijah went to the Lord. That was that I didn’t want to forget what it was like to hold Elijah and to feel him close to me. In a way I voiced this as a prayer, and it only occurred to me when my nephews visited this past weekend how the Lord the Father of compassionate heard my inmost yearnings and answered my prayer.

For a week or so before this last weekend my sister Bernadette who lives in Dunedin said she was planning to come to Christchurch for a business training conference for two days and I told her as always she was welcome to stay with us. In the last 10 days before her arrival she asked if it was ok to bring her two sons to stay as well. We had visited with them in Dunedin – 4/5 hours drive south of Christchurch, last Christmas. The last time they stayed with us was when Elijah went to the Lord, they were with us during this time and stayed a number of days with us. Mitchell my oldest nephew is 3 days older than my daughter Francesca and Logan is about 8 months younger than Elijah. And so it was they arrived on the Friday night and whilst their Mum attended the training conference they were part of our family. It didn’t take long for Francesca and Mitchell to strike up where they had last left of and in some ways Logan was on his own. This was not to say they didn’t include him in their play – but…. I was fascinated that he gravitated to Elijah’s toys and not just any but his favourite ones. This really touched me and so I engaged in helping him finding the balls for the toys and switching the noise on. This was Logan, but I was also seeing Elijah speaking to me through Logan’s actions. This was not to be all. On the Sunday we took the kids out to the Christchurch Arts Centre and also to the park. I can’t remember exactly the circumstances – but Logan fell and hurt himself, and I immediately felt that fatherly instinct kick and I scooped down to pick him and cuddle him. Tears in his eyes and head nestled into my neck he calmed. I asked him if he wanted to walk or for me to carry him – he indicated the later and for about 15 minutes I enjoyed the blessing of his embrace. Thanks be to God he knows us and hears us.

until next time
Darren

2008-09-09T20:34:00.007+12:00

Here's video clip of Elijah on the beach at Akaraoa in January 2007 - he is in his element in the water at the beach.

I guess my only regret is not having more footage like this I do like to watch Elijah in actionit keeps me in touch with him. One of my biggest fears has been forgetting what it felt like to hug him, or to kiss him, or what he sounds like.

I did dream of Elijah recently - we were in the hospital and he woke up and said to me " dad don't worry I'm not dead, I'm alive and well - don't worry about me - I was so exicted and said to him son what shall we do - we had to return your new bed" he responded " don't worry about me dad I'll be alright" and that was the end of the dream because i was stirred by Francesca climbing into our bed. It ws so fabulous to hear his voice - his speech was clear and I understood him and he understood me. I am thankful for this experience and interaction with him.

Peace - unti next time
Darren

2008-09-05T06:38:00.007+12:00

August continued in September

I asked the Lord and I heard the words of my Father in heaven say deep into my spirit "I too know what it's like to watch my son suffer die, that he might rise to new life" This resounded in me - amidst my turmoil - my Father knew the pain knew the journey - he knows me and my son is more precious to Him than he is to me. This reminded me of this picture

The last thing I wanted to share is that in the last minutes of Elijah's life he sat in my arms surrounded by Julie, Francesca, our close friends Bernard and Andre'a R Miles and the medical staff. They turned off all monitoring equipment and over 30 minutes they turned down the ventilator keeping Elijah alive - in the last 10 minutes all we could do was pray as Elijah was preparing to go. When the machine was switched off - Elijah had breathed his last, and was not still. The medical staff removed the ventilator tube from his mouth and remove the tape from around his mouth and washed his face and removed the many connections he had. I stroked his hair and cradled his lifeless body close to me - I stood up from the chair and wrapped his arms around my neck - his head resting on my shoulder - this was one hug that he couldn't fight - into my mind came the maternal word's " I too held the body of my lifeless son" These were the words of Mary, mother of Jesus, Mother of God - I knew also that she was closed to me. This scene is so beautifully captured by the Pieta - by Michelangelo.

These days around leading up to and around Elijahs' death were a profound spiritual experience for me. Revelations of who God is and of his great love and care - the Heart of the Father.

Till soon
Peace
Darren

2008-08-13T14:25:00.010+12:00

How could have I ever imgaine that I would be experiecing this day ? How could I have ever imagined that the precious gift of my son Elijah life would be so short and that a year ago today would be returned freely to the Lord, the giver of his life.

Today I have uploaded a video clip to youtube of the Gospel reading the the Homily from Elijah's Requiem Mass (Funeral) In his sermon Fr Miles talks about Elijah and not so much of what might have been for him, but rejoicing in what his life is and was and had achieved. He speaks of how Elijah had achieved much in his life. This is so true and Elijahs' legacy is that he continues to touch many people, even though he is no longer with us in the flesh. I know that through this blog and the clips on the youtubesite and through my continued interaction with families on the angelman syndrome listserve and the angelman syndrome forum, Elijah has reached out and shared his story, his life his smile and his joy, with people across the face of the earth.

Here is the clip - which can also be seen at http://www.youtube.com/user/dawg1467

Part 1

And

Part 2

As his Dad I have met and shared and cried with people from all over the world. The experience of Elijah's passing has enabled me to share some in grief and pain and trials of some other families that I would not have been able to reach out to. This helps make sense of the pain me, it gives Elijah's death meaning and purpose, not that it didn't have meaning and purpose for me already - as in I knew that the he was returning to the Lord. This doesnt' mean that I wouldn't give my right arm or more to have Elijah and well with us.

"Grief is the price we pay for having loved".

I remember with grateful thanks the last days of Elijah's life. There are several things that stand out for me that I would like to share - these for me are profound revelations of God being in the midst of all that was happening.

Firstly
Before we learned the full extent of the damage to Elijah's body and that we would not live, Julie and I had a conversation. In the conversation Julie said to me "why is this happening to us ?" and I found my mouth the word "So that God might be glorified"

Secondly
In the early hours of the mornimg after learning that Elijah would not live, I spend time outsiude the hospital walking up and down praying. my prayre was soemthing like this " Lord, I know you keep the world turning and you are powerful and have the ability to restore Elijah completely to health and reverse all the damage that has been done to his body, and imagine what a tesimony this would be to the doctors and staff at the hospital and surely you will be glorified. It was like a Gethsemane moment (Jesus in the garden before his death) I prayed "Father if it is possible let this cup pass from me....and found my mouth filled with the words " but not my will but yours be done" This prayer was part of letting Elijah go, especially when it came to the last moments of his life.

Thirdly
I felt a pain in my stomach and an and anguish deep in my spirit as well in the first hours of knowing that my Elijah's body would not survive the damage it had sustained.

to be continued

2008-08-01T22:56:00.004+12:00

This has been a full on week - over all as a family we have been pretty well. I did have some flu symptoms on and off all for several weeks but on the whole we have been well. this is significantly due to the house we are living in this year. Although the power bills have been higher we have been on the whoel wamer and dryer. We moved to this house a month before Elijah left us. On Monday morning francesca complained of having a bit of a sore shoulder and intially we put this down to how she had slept and so off she went to school and Julie and I to work. When i picked her up in the afternoon she told me she had been achedy all day and so I decided to take her temperature when we got home. Her temp was 38.4 (101.12) my first reaction to this was one of shock i gave her parcetemol to help bring it down. I was june last year that we temps like that in our house and it reminded me of the week of Elijahs' death. Franecsa had been unwell and had a high temperature and cough and a sniffle and then elijah picked up something simlar. It was this coupled with Elijah's inability to control his body temperature that set off the seizures that caused the damage to Elijah's body that took his life. I struggle emotionally with high tempratures and seizures as well, hence the shock reaction. Francesca temp this week climbed as high as 38.9 (102.2) before subsiding. I guess what I first experienced was what we became so used to with Elijah - and then I realised that Francesca is 7 and so less of an issue. I did for a split second thinking I hope Elijah doesn't get this. A double edged emotion - the reality that Elijah is not with us to be affected and the reality that Elijah is not with us.

I don't think that will ever change - you know that expectation that perhaps he will appear or i will wake up and find it is all a bad dream.

Elijah going to the Lord has increased my longing for the Heaven for the life which is to come, which I know for sure is but through the veil. I learning tonight by email of the death of an american pastor and evangelist Greg Laurie. I watched the following clip which is Greg sharing about his expereice of losing his son. I could so realte to the living moment by moment and wathed it through teary eyes. I share it with you.

peace be with you and yours
Darren

2008-06-29T13:43:00.010+12:00

Well it’s now been 9 month’s since we lost Elijah. And some days the feelings are just like that. Perhaps we misplaced him or he is hiding in a cupboard or under a bed waiting to peek a boo or suddenly appear and smile in a way that only he could, which says here I am. A bit like the day that all was quite in the house, and quiet in our house always meant that there was something going on. Even when you called “Elijah” sometimes there was a characteristic laugh or noise, or a complete silence. This day I searched the house high and low and the only door that was left was the bathroom door which was closed and I thought to myself surely not. But even as I opened the door, there was nothing then as I turned to face the open shower door I was showered with peals of laughter. There Elijah was happy as he ever was, he was found. Beaming ear to ear sitting in the bottom of the shower and now splashing in the surface water that had accumulated on the bottom of the shower. This is the Elijah, I long to find or long that he might find me. I know that in this life this is not to be but I can’t help dreaming of it anyway.

It was in this dream that I found myself recently on the afternoon if Francesca’s birthday party. We had played mini golf with 9 nine of here friends at a place across the other side of town. I guess I was busy helping the kids and organising the food and helping with games that I didn’t notice Elijah’s absence. It was only when we got home and I laid down on the sofa for a wee rest, I looked up to where we have a large picture of Elijah on the wall. The realisation that although he is always with us he wasn’t with us to celebrate Francesca’s birthday, to get under the feet of the other kids, although I am sure he would be walking now, even if aided, to help rip off wrapping paper. That reminds me of how keen Francesca has always been keen to help Elijah to open any birthday or Christmas present, rather to rip the paper off. Francesca did help for the first 18 months, until Elijah discovered the elation of doing this himself and taking more pleasure in playing with the wrapping paper than sometimes he initially did with the contents of the paper. As I was laid out taking my rest, I was half expecting Elijah to appear and grab onto my shirt and then with his strong upper body and arms which he developed and the sheer determination and strength would pull himself up onto my chest, with all the smiles and giggles accompanying. The warm salty tear began to form and find themselves down across my temples and into my hairline. I was overwhelmed by both the feeling of immense love and at the same time grief and tremendous loss. It was one of those feelings that you don’t think you can contain or if it continued you couldn’t survive. I am reminded once again that “grief is the price we pay for having loved”. I whispered to Julie through my tightened gut “somedays I just want Elijah back” Even for a the shortest of times, even with seizures and other physical challenges and yet I know there have been many other times of coughs and colds in our house since the one that pushed his temperature, triggered the onset of seizures and ultimately cause the devastating damage to his body. I have to remind myself that if Elijah had survived the seizure in August he may very well have faced them up to a half a dozen times since and perhaps his body, the body of a little boy would not have been able to cope with the assaults. I have to remind myself that we all have live in frail and weak human bodies, and that the Lord who is the giver of life knows what our bodies can and can’t cope with and that the days of all our lives are “written in his book before even one of them came to be”. Knowing this life is a preparation for that which is to come. The Scripture says “no eye has seen, no ear heard nor has it entered into the heart of man what God has prepared for those who love him. I know that Elijah is sharing in this ahead of me and forms again what the Bible calls a great cloud of witnesses that cheer on those who are still on the journey. It is this faith, the faith that Elijah shared that keeps me sane and also give Elijah’s all too short life meaning.

It can be easy to focus on what might have been for Elijah and mourn what might have been or so say it’s unfair his life was so short. The challenge is to look at his short life and to see what indeed he did do and achieve and the lives of people that he did touch, he did and his story continues to touch many people and this blog is one way that he continues to do that. On that vein I was recently in touch with a family of Cedric – http://celticangel.blogspot.com. There were things that I learned about Cedric that reminded me of Elijah and so I wrote his family. In one of the emails that I received from Cedric’s Mum she quoted something that I had written some time ago on this blog "I don't ask why anymore - it only leads to despair and consumes emotional energy - what I do know is that special parents are gifted with special kids to share their lives with"

Wow that really spoke to me when I read it. In a funny way you know that was something I needed to here. So much of energy when I first wrote this was consumed by the niggling why question and in a funny way but not to the same intensity I was having a few days recently when I know the why question different was sitting in the back of my mind. Reading this quote was the right time to be able to put the why question aside and remind myself about what I do know. I would rather struggle at time with the sovereignty of God in allow Elijah’s life to be short than be without life. Fruit of Elijah’s life and death is my personal growth and the growing of my soul to embrace and journey with the pain of my loss of him. This journey for me has allowed me to be able to reach out to some other families in pain, and on a tough journey, other families who have children with Angelman Syndrome. These have mainly been families in other countries and so I am thankful for technology that has facilitated this. I have been in touch with some of the local families although I haven’t felt that I have had energy to organise any events for the local Angelman Support Group. Let’s see what the later part of the year holds.

I was in tears as I wrote the first part of this entry this morning on board a flight from my home city of Christchurch to Auckland (1hr 20 min). I was at a Church seminar for the day and am completing this on the way home tonight. I had the opportunity to share with people as most of the folk in Auckland I had not seen since Elijah went to the Lord – so has been quite and emotional day.

Until next time Peace be with you and yours

Darren

2008-06-13T16:15:00.003+12:00

13 June 2008
It's funny how were have ther perception that time flies, and yet everyday is still 24 hours long. I have been unwell with the flu for the last 3 weeks and it seems life a long time. I guess the days just creep up on you. A bit like today the 13th of June, it is worthy note for two reasons. Fristly it is the last day of my fortieth year on the face of the earth, and secondly because it is the 9th month anniversary of Elijah leaving us and going to the Lord.

In one way it seems like yesterday that Elijah went and at the same time if feels like ages ago Elijah @ preschool loving the textures and at the same time some vague undefined time as well.

2008-05-04T22:40:00.004+12:00

Today I found some footage that i didn't realise that I had. It was a couple of video clips on Elijah's last day with us. They are of Francesca painting Elijah's foot. The ICU nurse suggested that it would be nice for Francesca to paint and take impressions of Elijahs' feet and hands and so she went to find some poster paint - blue of course and Francesca proceeded to paint Elijah's hands and feet and take impressions which we have and I have been meaning to frame for some time now. They would hang well alongside of the picture we have of Elijah that currently is on a window ledge in our lounge where he is flanked by two angel's. I thought I should go and take a picture so you can all see. The video link on Youtube is below. There were two short videos and I have put some music and linked them with a couple of pics of Francesca and Elijah.

Francesca and I were talking about Elijah tonight as we both lay on her bed tonight as she was getting ready to go off to sleep and I was telling her that it was this sort of time as i was getting her ready to go to sleep and was saying about the fun it was often to get them both ready for bed at night time. Francesca then asked me " what day of the week did Elijah die Dad?" "On a Monday" I replied "well we should have a party every Monday night to remember Elijah Daddy" said Francesca - "not sure if we can do a part every Monday sweetie" I replied - well we can specially remember Elijah on Monday's Dad cause that's the day the Elijah died and went to heaven Dad" "Ok Francesca" I replied "sounds like a plan to me"

Enjoy - Peace to you and yours
Darren

2008-04-20T13:59:00.007+12:00

Elijah and his Lolo ( Grandad - Julie's dad - February 2007)

I find myself at the moment at what seems to be a season - perhaps a season of grief within a season of grief. Today at church today one of the readings was one of the readings chosen and that was read at Elijah's funeral. Also the parish church that we went to today was a place we often went to Mass -(we are Catholic) with Elijah and in fact one day we met a nurse there in the pew behind us who had cared for Elijah when he was in the hospital. I has a children's area where parents can be as well and so even with Francesca (6) we sat in this area this morning and I found myself thinking of how I used to chase him around this area and how full on and on the go he was at Church - not that this even bothered anyone. and my mind was flooded with pictures of this and his smile. Friday week ago was talking to a former manager who lives at the other end of the country, who I had not spoken to probably about a year, and she asked how the family were and asked specifically about Elijah. I was stunned - the sudden realisation that I had not been in contact with for a while who did not know that Elijah had gone to the Lord. I faltered to say" we lost Elijah last year, he died in August.................and tears streamed down my cheeks, It took me a while before I cold compose myself to continue to share the story and something of the journey since. I had to think about why I was affected so much sharing that - because everyday I talk with people about Elijah - sometimes people I don't know. I guess sharing with someone I had worked closely with and had become friends made it raw - because she knew of Elijah. I was a train wreck for the rest of the day - pretty fragile. It was just a few days later and it was his anniversary.

We used to remember him everyday @ 5:40pm in the days and weeks following his death, often sitting watching the DVD of movies we showed at this vigil - (I hope to have these online soon). We made a special effort to celebrate his birthday. Although Monday's still remind me of Elijah, and Friday's as well - the day he went into hospital, the 13th of each month is a special anniversary for us. These are season - for example - it's pretty closed to being 2 years since Elijah was diagnosed with Angelman Syndrome - I'm sure it was the 19th the week after Easter.

Francesca injured herself the other day and required so have some medicine - paracetamol and I went to the refrigerator to get this and i saw two bottles both different strengths - one with Francesca's name the other with Elijah, there are still a couple of other bottles in the fridge with his name on them. I have the medicine to Francesca and then caught a tear in my eye - this was the first time in 8 months I thought about all the time we needed to give him meds twice a day. I also caught myself laughing about the days when I had prepared his meds and i couldn't remember which was the melatonin and which was the sodium valporate and having to re do the meds.

Elijah exploring the baggage carousel at the airport when his Lolo was going home - Feb 2007

I shared with some on in the last week about how I have been feeling the things that have crept up on me. They said in time it will not be so painful. I found myself wondering if I want it to be less painful. There is a part of me that wants this to be so but also a part of me that doesn't want to let go of the bittersweet pain that I feel when these times and things remind me of Elijah. the hardest thing I guess for me is not wanting to forget how Elijah made me feel, how he was to hug and embrace and the noise he would make. Not a day goes by without me spending some time dwelling on these things and so look forward to the time when I will meet him again.

The last few days have also been pretty hard going - there is a 5 year old little girl from the USA who choked on some food and had breathing difficulties and cardiac arrest and suffered major and severe brain damage that she would not recover from and her parents like ourselves made the decision to turn of the life support and she died on Friday New Zealand time. Her name is Ashley please pray for her family.

Everyday I am encouraged by the fact that there are many people out there including those who read this blog who pray for us and encourage me to live each day. Elijah continues to inspire and touch many people. I have signed up to face book in the last week and have many Angelman friends. I have uploaded picture of Elijah - and some of his last days with us in an effort to share Elijah's story - To God be the glory

Peace be with you and Yours
Darren

2008-03-24T21:06:00.012+13:00

Hiya all

Peace be with you and yours, lots of things have happened in the last month since I posted and I have been quite emotionally drained by some other issues going on for the last month these have distracted me somewhat

Some good news is that Matthew who I have mentioned in a previous post from Sydney has Angelman syndrome and in total spend 9 weeks in ICU, is progressing slowly but well. He is more settled and the seizures have as well. He was in a ward as of last Thursday and still has some way to go. It has been a privilege to share this journey - I am able to in contact with his mum every few days. This news has blessed me as I have been praying fervently for good reports.

This is one of several photos taken of Elijah in January 2007. This was taken at a restaurant called the Curator's House in Christchurch. Julie's sister and Aunt and Dad were visiting and we had a room to ourselves. Elijah had eaten and so since we had the room to ourselves we could let him down to roam. As you can see he is curious and has pulled himself up to look out the window. He has headed for the light. It was the attraction of seeing what was out the window and this picture show the light shining though and you can see him stepping up to see. To me this picture speaks alot about Elijah and I see him stepping up to embrace the light, and eargerness about him, to embrace eternity, to embrace his Lord and his Saviour Jesus Christ.

I have really felt the pain of Elijah not being with us today. We went out to ten pin bowling and then shopping and then went to the cemetery and we arrived there a little after 5pm. I spent some time sitting on the ground were he is buried pulling out weeds from among the sparsely growing grass. It really needs more grass seed and some fertiliser. Anyway the sun was very intense and so I lay down beside him and immediately I thought of how he used to love to come and climb on and over me. What intensified this more was when Francesca came and leaned against me. With the sun on my back I was just waiting for Elijah to climb on as well, the pain and the tears welled up in me. I also realised the the day (Monday) and the time ( 5:30) (this was the time we were taking Elijah off the ventilator) and I thought of the last minutes of his life as I embraced him and we prayed. I wept. The pain is fresh still and the tears plentiful. It's time like this that I physically feel the tightness in my gut and the longing for my son deep in my spirit.

"O Elijah my sweet son how I long to embrace you again,
To feel you strain and wriggle from my grasp
To turn and smile with a face of love
and to climb on me
O how my world is poorer without you
and yet I know you are but through the veil.
I know that my Father God knows the pain
The pain of watching his only son die
The pain of letting him go
(This he told me when it was time to let you go to Him)
Yet in the knowledge that he would yet again live
and I know that you my son Elijah share in this life of His.
Elijah you inspire me with you courage
You taught me, you discipled me, to love without counting the cost
To trust when I felt all was falling apart
To learn to lean on a power far greater than myself
For I am but a weak and fragile human being
In my utter weakness I have found my grace strength, courage and meaning
Divine grace divine strength, divine courage and divine meaning.
My son Elijah, I long for the day we may again embrace
Where every one of my tears will be wiped again, and I shall mourn no more
Elijah, continue to inspire me,
shout my name loudly from the grandstand and the sidelines
Remember me I pray before the Throne of grace
I love you my dear son with all my heart.

Grief is the price we pay for having loved.

Must sign off and sleep

May the life of Elijah Michael James Humphries continue to strengthen encourage and inspire all you learn of his journey.

May peace be with you and yours
Darren

2008-02-20T23:17:00.006+13:00

Elijah's 4th Birthday.

Sometime circumstances mean that you are parted from your loved ones on special occasions. These occasions thankfully are rare. Not in my wildest dreams did I ever expect to be celebrating my son Elijah's birthday without him being present, for me at least not until I had gone before him. I don't expect the firsts of anything to be easy as many people have shared with me.

In preparation Julie and I wanted to make Elijah's 4th birthday a celebration of his life, Feb 7 is still Elijah's birthday even if he isn't with us in body to celebrate. So we arranged it so. We invited some close friends to join us at the cemetery to pray and to sing and then back to our house for chocolate cake and ice cream and we had some time with one of these families we shared some more time and food at a favourite eating place a place that we had celebrated together as families (with Elijah) before.

I didn't work on the 7th - just wasn't sure how i would be - I spent time making a wonderful chocolate cake - boy I know this was a favourite of Elijah - I watched him eat cake at his 3rd birthday at preschool for his 3rd and how he could hardly wait for it to be on the table let alone wait for the singing of Happy Birthday before he at least got his finger tips to the cake. I also spent some time in the afternoon preparing a DVD movie for his forth birthday. Recently I have become a big fan of the recording of somewhere over the rainbow as recorded by 'Iz' Israel Kamakawiwo Ole -

And so I spent time putting together some video from last year and photos of friends and family - we have so many photos of Elijah to choose from. Lots of tears as the final touches came together.

Julie and I went to pick up Francesca from the school and went to a balloon shop and got a bit helium filled yellow smiley balloon and a bit yellow balloon to write on for Eiljah.

We met our friends at the cemetery and had some time for chatting and sharing and some prayer and singing - " These are the days of Elijah"

Following that we had time together over gluten free wheat free chocolate cake and ice cream and watched the DVD movie I had prepared - I hope to break it down and upload to you tube some time soon. Over all it was a great celebration and we invited people to wirte greeting to Elijah on a big helium filled balloon which is now in the lounge by his picture.

It was a great celebration of Elijha's birthday !

One of the things that struck me was that the previous year as we had the year before that we prayed for Elijah and invited peole to lay hands on him and pray and in February 2007 I prayed "Lord let Elijah walk in this coming year before his next birthday and heal him Lord from his gentic condition" You know the Lord did answer my prayer bittersweet be it how he answered it. The days following Elijah's birthday and in fact the weekend was a time when I didn't feel like being around people and was really a malencolic time - time to cry and grieve.

As often I do I just felt the need to be closed to Elijah and to here him and to see him and so I spent quite a bit of time over the weekend watching snippets of him on video and some of his funeral. I guess there is a fear in me that I will forget what he sounds like. It's hard cause you can't hug televisions and so I hugged Francesca a bit more than ususal.

Elijah inspires me everyday.

Elijah I love you beyond words - continue to inspire your Daddy

2008-02-16T21:35:00.005+13:00

It's been a busy week and a couple of days since I last wrote - there has been alot happening in the Angel world and outside it as well.

I had a phone conversation today and an email that enouraged me.

The phone call - I cried as I talked to a lady in TN in the USA (Lady A) and told her of the journey of the last days of Elijahs' life and of my passion for sharing and caring for other families with Angelman Syndrome. The reason I rang her was my chatting in the Angelman Forum chat room with a mum who lived in TN USA (Lady B)w hose recently diagnosed daughter has started haing seizures - atonic (drop seizures) and had had lots, I along with another mum encouraged her to go to the ER because of the numbers of seizures. Turns out after five hours and no cessation of the seizures they sent her home with an appointment for the neuro. When I learned this I was angry and felt compelled to help her so I looked up a state contact for the Foundation in the US (Lady A) and have been able to put her in contact with the lady(Lady B) I had been chatting to. The lady who was the contact encouraged me and really blessed me telling me that the Lord had placed me in the chat room at the right time to connect with this lady. The last thing I felt like was that Lady B was going to be facing some of the same stuff we did when Elijah frist had seizures. Turns out in the course of the converation that Lady A has also done research on seizures and meds of children with Angelman Syndrome and she was the right person to call.

The email

Tech nology has helped creat a global village. The short email which in fact was generated by a recent comment here on the blog reads - "I so appreciate the frankness that you use in speaking about Elijah and the blessing that he was and continues to be in your life. I have loved viewing the videos on youtube of your beautiful son and the testimony that you shared. The Lord is using you and Elijah in mighty ways! I've thought of you all often and continue to pray for you."

The time around Elijah's going to the Lord was so very painful that I thought I would you know write a final entry in this blog and let it be it, and yet I was encouraged by a close and dear friend, to keep on writing and sharing the journey, that it might be a testament to Elijah, a testament of the journey, the journey of pain and suffering and loss that these writing of mine might be an encouragement, and inspiration and hope for others, but also to chronicle the ongoing legacy of Elijah Michael James as he inspires me, and inspired by him and by the Lord to reach out and to share hope and peace.

Update on Matthew - please see previous posts.

Matthew had continued this week to have a high temperature and seizures and the team in the hospital are trying different medications to break the seizures which now have not abated for some days - his mum has asked for more prayers and so if you are a prayer please pray for a mircale for young matthew and his mum dad and family - matthew is 3 and a half, and a little boys body can only take so much.

2008-02-07T23:42:00.000+13:00

7/02/08 - Elijah's 4th Birthday

Elijah - gives Matthew a push. I will share more about Elijah's birthday celebrations today in a later post. Apart from telling you that there is more new footage of Elijah on my Youtube site
www.youtube.com/dawg1467

There is footage from Elijah's 3rd Birthday. It was a bittersweet day today - I spent some time with Elijah by myself at the cemetery this morning talking to him. I did ask him to pray especially for Matthew today - for those of you who have been following. I told him it would be special if Matthew could stir on his (Elijah's birthday) Last night I posted this sentiment on the Angelman Syndrome and some one responded by saying " It would not surprise me in Matthew awakens tomorrow on Elijah birthday. No doubt in my mind the Elijah is right there looking over him with you and may just give Matthew the little extra strength to awaken seizure free. "

To God be the glory - thanks to all of you who have prayed for Matthew and ourselves today - Elijah's ministry and legacy continues - I do believe this will be the case as long as I have breath in my body. The following it and update on Matthew.

Until next time - Peace be with you and yours.
Darren

I received a text from Fay tonight to say that Matthew has opened his eyes a little. This text came right at the time some friends who were at our house were asking if I had heard anything about Matthew today. Initially they thought that the movement in his eyes - flickering was seizure activity - but there has not been any other signs of seizures. Matthew has also responded in opening his eyes also when he heard his day speak in the room and so there is some responsiveness - this is fab news. There was rejoicing in our house tonight.

I have spoken with Fay tonight - understandably she is not getting he hopes up too much at this point in time except to say that this is a good sign. The other news is that Matthew will have another scan this coming week and Fay and Nick have been told that what they had been told about on the previous scans may not be correct and that it is completly possible that the damage that showed up on the previous scan may be reversible. (Darren says - I am praying and holding out for a completely clear scan)

Fay is in good spirits and has been overwhelmed by the support from those who have sent her messages and emails and have been praying and thinking of Matthew and Fay and his family. I would like to extend on her behalf a big thank to you and appreciation and gratitude for you care and support during this time.

Darren

2008-02-04T23:15:00.000+13:00

Update on Matthew

I have been able to speak with and share with Matthews parents during last week at the hospital and to be able to share with them something of Elijah' journey, and our time in the hospital and the last days of Elijah's life. I felt that I needed to reach out to Fay and Nick's parents and look for opportunities to serve them. I knew this was something I had to do and I was and continue to be inspired by Elijah.

Matthew is still in need of prayer, he was sedated and had his seizure meds changes and then slowly the sedation removed but he was still having seizures and so he was sedated again and his meds changed, even in the coma he was having seizure and so the medical staff have changed the sedating and the seizure meds. Matthew has also overcome a dose of pneumonia, he was for a day or so not tolerating his food, but now he is taking the food through the feeding tube. Thanks be to God.

I have been able to get the message of Matthew's situation out to many people locally and accross the country lots of the same people who stood with us during Elijah's life and especially in the last days of his life interceding before the throne, people have been praying for a miracle for Matthew and grace for his family across New Zealand. I have been in touch with Matthews' mum each day by cellphone texting - thanks be to God for technology and have been able to facilitate email updates and coordinate some of these people's responses. I just know how it was when Elijhah was unwell and when he went to the Lord, how grateful we were for those who helped communication with people. It's something small to be able to do for his family when I am here in NZ and physically seperate.

Yesterday at Church I received the following txt message written by Matthew's Dad

A Prayer for Matthew

For some of us
It's easy to run, to live to fly,
to soar thru dayd to day as challenges come by,

For some of us
It's easy to paint or sculp a work of art,
to leave behind a legacy, others think is great.

For some of us
It's easy to write or speak out mind,
to articulate precisely what others need to hear.

What's easy for you my little man,
is to love without condition,
to expereince the joy this berings in your daily mission,

Ypu've shown us whta it means to love,
this we never forget,
I'm proud so proud of all you've done
my precious little boy.

This is they prayer I have have to night,
please combe back to us soon.

Wriiten by Nick Matthew's Dad

TBC -
It's Elijah's 4th birthday on thursday 7th and we will be going to the cemetery and having a birthday cake Yeah - my son will be 4 this week !

until next time which I hope will be quite soon
Darren

2008-01-27T17:54:00.000+13:00

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.

Darren

2008-01-24T21:47:00.000+13:00

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 - www.youtube.com/dawg1467.

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

2008-01-14T23:32:00.000+13:00

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 http://www.youtube.com/profile?user=dawg1467

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.
Darren

2007-12-28T00:03:00.000+13:00

Well we are now in the season of Christmas, celebrating the not just the gifts and the family time but the Birth of Jesus Christ. It has been said Jesus is the Reason for the season. It could be for us as a family a particularly sad time if we allow it to be, I’m not sure that this is what Elijah would want for us. But rather Elijah (Yaweh is my God) Michael (who is like unto the Lord) he would want us to have a primary focus on Jesus the reason for the season first. This is something that a counsellor had said to us as well. This does not mean to say that this is not a time that is tinged with sadness that Elijah is not present with us in the flesh to share it with us, or no gifts under the tree from us or from Santa Claus and there is real pain associated with it and an opportunity before us – what do you do with the pain?. Do I allow my soul to enlarge and grow as a result and welcome or even readily embrace the times of pain or darkness, or do I not allow my soul not to enlarge and resent the pain and times of darkness. Well I have decided to choose the first path – the path to growth – I remind myself – grief is the price I pay for having loved. I am consoled that the will of God will not take me where the grace of God keep me.

In book I have been reading called something like A Grace Disguised – I’m not sure I have brought it with me out of town – the author writes a chapter – called Amputated from Self. One of the things the author make reference to amputees and how these people they experience and itch or some sort of sensation in the limb they no longer have and this called having a phantom limb. I’ve been in a season of this and have missed Elijah physically – and I guess some of the things like going to church for Christmas is just not the same – and it’s got a weird sensation about it – like the limb that is missing. Francesca wondered to me if Santa Claus knew that Elijah was now living with Jesus in heaven – I told her that I had told Santa already. We had a breakfast on Christmas Day with our close friends Bernard and Andrea and their daughters Siobhan and Briana– who live 9 houses down the road on the same street. We have done this each Christmas since we moved to Christchurch. Julie and I had already had a good crying session earlier in the morning. Julie myself and Francesca delivered Christmas cards to friends and then took deck chairs and spent some time at the cemetery thinking and talking to Elijah. On December 26th we drove south to Dunedin all up a 5 hour drive – could help looking for Elijah in the space he always occupied in the back seat behind Julie. We are staying with my sister her till just before New Year and will head home. Their house has many memories of the one and only trip we had with Elijah down here.

The loss of Elijah cuts both ways. On one hand we experience – the pain and loss of him and yet now he enjoys eternal life free from his physical struggles – no more seizures and physical restrictions. One the other hand Julie Francesca and I are able to freely travel out of town and stay place in a way that we could have not done because of needing to consider Elijah’s needs. This “freedom” is Elijah’s gift to us bittersweet though it might be.

Today whilst at and Aunt’s house she shared with me of how she was touched being with us in Christchurch for the Family vigil and funeral when the Lord called Elijah and how she has also shared something of Elijah with other friends and people she has met. The ministry of Elijah continues. I have a DVD with some footage of Elijah with me and will look to get a bunch of copies of this run before we head home to share with family. I am watching this DVD as I type tonight – all of the rest of the family and my sisters family are in bed asleep – this is a special time that I regularly like to share with my beloved son. Sometimes in tears, sometimes in awe of the gift from the Lord that Elijah and gratitude and thanksgiving for the journey thus far.

One of the clips has pictures of Elijah set to the Josh Groban song – you raise me up and the other is set to the song sung by Celine Dion. Both were used at Elijah’s Family Vigil.

In the days following Elijah going to the Lord one of my work colleagues sent me the words for the Celine Dion song Fly – I listened to it on the net and it sent ripples down my spine – it still does and in closing tonight I share them.

Fly, fly little wing
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven's love
Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again

Fly, fly precious one
Your endless journey has begun
Take your gentle happiness
Far too beautiful for this
Cross over to the other shore
There is peace forevermore
But hold this mem'ry bittersweet
Until we meet

Fly, fly do not fear
Don't waste a breath,
don't shed a tear
Your heart is pure, your soul is free
Be on your way, don't wait for me
Above the universe you'll climb
On beyond the hands of time
The moon will rise, the sun will set
But I won't forget

Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light

Peace be with you and yours.
Darren

Check out a video clip of the Canterbury Angleman Syndrome Family end of year picnic

2007-11-27T22:19:00.000+13:00

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

2007-11-13T18:16:00.000+13:00

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

2007-10-12T22:37:00.000+13:00

This us a photo that my Dad sent me yesterday, one of the opportunities that had to turn Elijah's world upside down and you know what he enjoyed it just all the more and although it's a bit hard to see the smile here on his face I can assure you that he is smiling. We all miss Elijah being physical with us, climbing on top of us and down and kicking and from time to time pulling hair. Always doing something - climbing on something or climbing down or trying to get in or out of something. This was on the reasons why it was so strange and hard in a way to see Elijah inactive at the hospital for so long, it was just not him and I guess we were all hoping that within a few days that he would be back to being his active self as was the case following the other visits to the hospital. Even in his new bed, there was no stopping his movement and we never really managed to get blankets over him at any time during his life apart from when he was a small child, and safety sleeps for a short time and lots of safety pins. I'm going to share some more retrospectively about Elijah's time in the hospital and the journey - I'm going to share some photos as well that some might find hard to see but these are part of the journey, and I'm choosing to share them as part of the journey.

Lying still, or staying still in any way shape or form was never an activity that Elijah specialised in even when he wasn't feeling so flash there always seemed to be some energy in his system that sparked him along. Only if he was really not doing well was he not active. Even following visits to the hospital it could be hard to convince the hospital staff that he was still having seizures at time because he would be so active in between and the staff saw his activity as a sign that he was ok and nothing was going on. I guess it becomes easier over time for Julie and i who have observed Elijah over the last year +. On thursday night we put Elijah off to bed, we knew his temperature had been up - as a result of the coughy bug that had been going around and so so we knew that we might have been in for a bit off a challenging night. Elijah had couple of drop seizures during the day but not alot but none the less we prepared ourselves for a possible long night as we had done a number of times before. I came home from work and we had dinner and fed Elijah and prepared him to go to bed as always little did I know of the night ahead. Elijah settled and stirred a little after 8 and he was hot 39 deg C and so we took some of his clothes off gave him a wash down, Julie had given him paracetemol and so after hi temp still being up we gave him a dose of Ibuprofen, he was having a few drops and was a little unstable, we cooled him off with a cool facecloth and things settled down close to 9pm and so we let him settle go off to sleep which he did, and so we put Francesca to bed and in time both Julie went to bed and so did I.

To be continued

2007-10-08T22:51:00.000+13:00

The last couple of days have I've been emotionally unstable - tears close to my eyes, and a bit distracted. On Sunday night I put pen to paper (read fingers to keyboard) to write a dedication message about Elijah for the Angelman New Zealand newletter. It took me a good hour or more with tears to write it and this is what I wrote.

Elijah Michael James Humphries -Born 7 February 2004 Called home - 13 August 2008 - treasured son of Darren and Julie and much loved brother of Francesca. As a family we give thanks to God for the life of Elijah, and for the Angelman Syndrome that he journeyed his life with. The house is quieter without Elijah on hands and knees chargin up and down the hall, wrestling with Francesca, smiling and laughing and seldom frowning, Bananas, go off more quickly because they are still here, and not readily consumed, as he was accustomed to do, the nights are quieter too and it took some getting used to sleeping through the night and not waking to be gretted during the night by a smiling often naked little boy displaying his handiwork a shredded nappy or pooh paintings. For all of these things we give thanks. A testimony to his life is the tremedous joy he brought to everyone he met.It is only in his passing we have ralised the lnumber of people Elijah and his short life have touched and will continue to do so. We grieve now but only becuase we loved. We express our thanks to all who have sent us cards and messages. Please continue to journey with us via Elijah's Blog - http://elijah-angelstory.blogspot.com/ which Darren continues to write. We continue also our journey in Elijahs' memory, working with families of children with Angleman Syndrome and working to promote an awareness.

I guess it's just the reality that Elijah's no longer physically with us - takes some journeying through. I've been sleeping ok, but phyiscally on edge yesterday - told my boss frist thing in the morning - funny hope people react when you tell them you are emotionally unstable today and could burst into tears at anytime. It took some energy yesterday to focus on what I needed to do at work, one job at a time.

I slept ok last night and will see how the journey goes today - the photo above was taken at the Gethsename gardens here in Christchurch a beautiful private gardens. It was the photo used on the from of the Order of Service for Elijah's funeral. It's funny how some of the nicest photos are the ones you take youself and are also very improptu.

I'm glad that the Lord has something much better in store for me cause the pain of loosing Elijah is intense, and can just creep up on me when I am least expcting it.

Peace

Darren

2007-10-01T21:33:00.000+13:00

Well Friday went ok for us as a family, although it was a full on day. Julie Francesca and I went to see a counsellor who we have been seeing for a couple of weeks. She is from Catholic social services, Julie has spent some time with her before around the whole area of grief after Elijah was diagnose with Angelman Syndrome. The appointment was just after lunch and we had been told by the courier company that they would be around to collect Elijah's things after 2. So I dropped Julie at the mall and took Francesca and headed for home. 2 o'clock came and went and so close to about 3 I decided I couldn't wait any longer and so i hunted for an elm key and began to dismantle Elijah's bed myself. I started on it but found that the slats and the mechanism underneath it that was used for lifting up the bed was to heavy to be able to lift out on my own. I called a Friend who is a teacher but who was on holiday because it's school holidays to come and help me. At the same time our close friend Andrea arrived at the house. Robert and Andrea helped me with the taking apart. The good thing about this is that I was here when they put it up and so knew at least how it should come apart. I guess it was a bit like driving Elijah to the vigil and the church and to the cemetery it was something that I would have preferred to do, something personal for me as Elijah's dad, an act of service for my son. It was not until after 4pm that the truck turned up to pick up the things, by then Julie has come home. The three men who cam quietly took the bed an Elijah's high chair, stroller, walker and car seat and in a short time they were gone, this was the leting go of these things. I guess we had been preparing ourselves most of the week and so when it came the day it wasn't as difficult as first expected. We moved Francesca into Elijah's room and moved the large photo that we have of Elijah from his room to the lounge. He is never far away but sometimes not close enough. I do miss hugging him and seeing him in the flesh each day, although I visit the cemetery each day it's still not the same. People say the pain will lessen over time - I trust that this is the case - by it is very real now, and really quite indescribably. All I want at the moment is my son alive and well, but I know this is beyond my grasp. Julie was folding some Elijah's clothes to put in a large plastic container to go in the Elijah room. I stopped and picked up one of the helmets that were made for him to where so he did not hurt himself if he experienced seizures - I found myself feeling angry - it's not *(&(* fair I found myself saying and found both the pain and the tears welling up. Julie moves to comfort me but I just needed the space. The Bible says - though I walk through the valley of the shadow of death I fear now illl for with your rod and staff you comfort me. The emphasis is mine in this passage and is important and i take comfort in these words they are not static words - I remind myself that it is a journey filled with pain and suffering yes, but a journey none the less

2007-09-25T23:00:00.000+12:00

It's going to one of those weeks you know, I guess for me it started Friday, I had a day of really missing Eijah and then knew that on Saturday that we had to return some toys to the Special Needs Toy Library in the city. They were due on the weekend that Elijah was in hospital. It was a blessing to have a couple of the staff from the toy library attend Elijah's funeral. I had rung them the week after we buried Elijah and asked about having some one come and collect the toys that we had borrowed for Elijah but never quite got back to them to arrange a specific time to arrange this. although difficult I knew it was important that I make that trip. I guess there is nothing quite that i could have done to prepare myself for how difficult this was going to be.

On saturday morning we made a list of all the things we wanted to do and then made sure we had all of the toys for the library. We couldn't find all on the pieces for the skittle set which he enojoyed so much but having moved house as well they were bound to be about the place somewhere. I searched in the garage and there among alot of things that we still have to sort and bring into the house were so many reminders of Elijah. His cot which he spent so many sleepless nights in, which he joyfully covered in pooh, and shredded so many nappies in. His old car seat which he so many times wriggle his arms out of, I lots count of the number of times i had to stop the car and restrap him in or tighten the straps so he couldn't get out and it seemed the more I tried the more he tried as well. His old stroller which we wheeled him in, in fact it was originally bought for Francesca and Elijah inherited it when he was born and Francesca had out grown it. It carried him for so many trips to the preschool, I used to put it in the car and take Elijah to preschool along with the stroller and Julie would then go and pick him up and wheel him home. There were other toys that he delighted to play with and I held some of them and cried, thinging of the many hours they delighted Elijah, and he was delighted with them. I looked high and low and we couldn't find them and so on our way we went anyway. It was another of those journeys we so often made on saturday mornings to the toy library although there was something so different about this trip, it was without our little boy and was to return some of the toys that he loved so much. We parked right outside the library and Julie and Francesca waited in the car as i took the toys into the returns desk. I told them that they were overdue and that i could not find some of the items, and that the reason why they were so late was that Elijah had died and we just hadn't got them back. My eyes filled with tears and I was overwhelmed by what what going on inside me. One of the ladies Donna who took a special interest in Elijah came and told me that i shouldn't worry about any missing pieces and any late payments, i said i just have to go, and she came with me outside. She told me that she had been thinking alot about us and Elijah and asked how we had been and I told here that our journey was one day at a time. She invited us to still come back if we felt able to borrow toys. I got back in the car and told Julie "that was pretty hard" and disolved once again in tears and we all cried. We left the library grounds and drove down the road and I pulled over and we spent some time crying. I miss my son. We went to church on Saturday night and then to a concert. A friend was in the freinds and family concert - part of a 128 member barbershop choir. One of the guests sang the Josh Groban Song " You raise me up" - we used this song along with photos of Elijah at his family vigil on the night before his funeral - Francesca observed to me during it " Daddy mummy's crying" and then " you're crying as well" As i closed my eyes I could see the pictures of Elijah that we had put together to this music. Sunday we didn't go anywhere and i just didn't want to be around people and so we stayed home, Sunday night I cried myself to sleep, I knew it was going to be a tough week.

On Friday Elijah's bed, highchair, stroller walker and car seat will be collected. They are funded by the government for Elijah's use and the time has come for them to be returned. Francesca will be moving into Elijah's room and we have bought new beds for Francesca and one for Elijah a single bed which will go into the room that Francesca is vacating. It will be a hard day on Friday I know because Monday and Today has been emotionally challenging days for me, as well as Julie and Francesca.

"Grief is the price we pay

for having loved"

2007-09-23T23:32:00.000+12:00

It's been a tough month since I last posted so many things happening and so many new things to come to terms with since Elijah went to be with the Lord. Just simple things like sleeping through the night and not going to sleep with one eye half open and one ear cocked awaiting to hear Elijah's distance call in the middle of the night. Elijah was almost always the first person in the house to greet me in the mornings when I rose and so I miss that as well. These are just ordinary day to day simple things that I have found hard, or just expecting him to come charging down the hallway at break neck speed grinning from ear to ear and then pulling at me to get my attention or have he lift him and cuddle him only to be wanting to be getting on with something else most often in the morning being ready to eat. there has been a strange stockpiling of bananas in the house - oh how Elijah you use to eat so many. I now try at least to eat one for Elijah's each day.

Something special happened for me on Thursday night, I was coming home from work and this night a bit later than I had before and our close friends were coming for dinner, and so not all of us were going to visit Elijah at the Cemetery as has become our custom as many days as possible. I had been to see Elijah and was driving home on the way to the supermarket. As I drove down this stretch of road my eyes were drawn to a light blue balloon making it's was across the street and then my gaze was drawn to the little boy who had just lost the balloon and could see that he had tears in his eyes and his mother was trying to calm him and explain to him that there was not a way to retrieve the balloon. I knew i had to stop and as came to a stop I could see that the balloon has gone down the bank and was just in the edge of the Avon River and was moving not fast but stying pretty close to the band of the river. The thought came into my head I've just got to get that ballon for the little boy even if it means getting wet. (at Elijah's funeral all the kids let off helium filled balloons after Elijah's casket had been lowered and the sight of this balloon same colour spured me on) I ran and climbed down and got hold of the balloon. I scramble up the bank and onto the foot path and could see the the lady in the car had her indicator on showing she was about to pull out into traffic. I wave at her and thankfully she saw me. I crossed the busy road and she was standing by her car when i reached saying" I know someone who will be happy to see you" I replied I couldn't let a little boy loose his balloon. She opened the back door and there was a little boy about 3/ 1/2 to 4 beaming from ear to ear as I handed him the balloon and he said thank you very much. I said it's my pleasure as i know what it's like for you to loose something. I shared with the little boys mum that the colour of the balloon reminded me of Elijah and that he had passed away recently and we let off the same coloured balloon at the cemetery - and I knew I had had to stop. I got back to my car and wen "YAHOOOOOOOOO!" it really made my day and left me of the sense that the spirit of Elijah was with me.

Till next time - still preparing to share some more. - Darren

2007-08-22T08:04:00.000+12:00

It's been more than a week since my last post and I have much to share the short is that damage that the seizures caused Elijah's body was too much for his body to handle and he suffered total liver and kidney failure and massive brain damage - and was not expected to live 24 hours and so we gathered the family and let him go to Jesus when his ventilator was turned off to allow him to breath on his own which he didn't and he went to be with the Lord approx 5:40 on Monday the 13th of August 2007. For Elijah life has only changed not ended. I want to share the journey with you as I have for these many months, the last hours of my son Elijah's life, what I am going to share with you maybe hard for you to read as it is hard for me to write but as I have always share the raw reality highs and lows of the journey I will share it like that still - I will be writing in several posts.

- I slept overnight on Saturday night with Elijah and there was no real change to Elijah's condition. I am sad to say that Elijah did not make any more progress and than my last post. When the medical staff tried removing the breathing tube from Elijah on the ventilator on Sunday Morning he did not respond breathing on his own as he had been doing on the ventilator and so they had to put the tube back in. We learned on Sunday afternoon that some blood tests that had been done had brought back some significant results. at least two areas of liver function we abnormal. In most of us these levels would 100 and post seizure it's not uncommon for the reading to be up to 300, in Elijah's case they were 16000 and 17000 repectively - we knew that Elijah's liver had sustained a significant assault and so the decision was to add plasma, and some other medications to combat this assault, at that stage we really had no idea what other damage Elijah's body had sustained. Julie was due to sleep over and a close friend went into the hospital and I was going to sleep over. Francesca was sleeping over with close friends who live 9 doors up the road. I got a call from Julie to say that our specialist had decided to do a MRI scan. We had been alerted the day before that there was a possibility of Elijah sustaining brain damage, but the reality of this had not yet be realised. I said I would come back into the hospital. I found myself being physically sick and whilst talking to a pastor on the phone I really lost the plot. Because of the sustained length of time that Elijah had been on the ventilator that he along with Julie and I would be transferred to Starship Children's Hospital in Auckland at the other end of the country. Family soon 3 members of the leadership team of the Christian Community that we are part of were on the door step, to cry with me and to plan for the possibility of the the transfer which was almost certain to happen, so we worked through a plan and prayed and then one of the brother drove me to the hospital and another took my car in. I told them today is not the day for dying ! - to be continued - Darren

2007-08-11T16:55:00.000+12:00

Dear Friends and Family,

Thanks to those of you who have sent messages of encrouagement and support and offered intercession for us and Elijah as well feel buoyed by this and hapy to report that Elijah is progressing.

Julie slept in the hospital with Elijah and he was sedated overnight. This morning they stopped the sedation @ 5am and happy to report this ealy this afternoon, Elijah initiated breathing on his own - Thanks be to God. We now need to wait for him to awaken himself - his body will be exhausted and it will take some time for it to recover. The medical staff will only remove the intubation tube connected to the ventilator when he gains consciousness - in the meantime it is giving him some added oxygen and so it's now a waiting time for him to wake on his own and there is no time frame on this. The Medical staff have been just fabuluous. After the he is off the ventilator he will be move from the Intensive care to a children's ward and the whole thing reviewed from there and kept under observation. This is the worst lot of seizures Elijah has ever had.

I hope to have another update when he stirs or perhaps tomorrow morning - thank you so much again for your prayers and you emails txts and good wishes. Please also keep in mind another little boy Brady who also has angelman syndrome and live in Alabama in the U.S. who has also been hospitalised with severe seizures.

Love and regards to all
Darren - on behalf of the Humphries Family

2007-08-11T16:22:00.000+12:00

Friday 10/08/07

Hi friends,

Elijah hade a fever as a result of of some flu - coldy stuff that's been about in our house this week. Woke at 5 with a 15 minute seizure this morning - can't remember what it's called - jerking extremities - was about to take to hospital and then he was having seizures every few minutes with short gaps and so we called and ambulance - when I got to the hospital he had sezied in the ambulance and was then had a prolonged seizure lasting and hour - with vomitting - the end result was that he was have difficulat with breathing and oxygen saturation low - the long and short is that he is intensive care on a ventilator - to help with his recovery - this will be reviewed but he may need to be on it for up to 24 hours and see from there.

We have had a good number of trips to the hospital before but nothing this intense. Julie and I have been on quite a rollercoaster this morning

If you pray I would ask you to pray for Elijah Julie myself and out daughter Francesca - if not please send us your good thoughts.

Darren

Update

2007-06-19T23:30:00.000+12:00

Well it's been a couple of weeks since I last made and entry and this has mainly been because of sickness in the Humphries Family and so less time online to be able to update. It's been everyone who has been unwell including Elijah, this has meant for him and increase in breakthrough seizures culminating in vomiting and lots of seizures and a visit to the hospital. We had added clobezam to Elijah's medication to settle these for him. This has mostly been successful with a few seizures above it but only a few thankfully. We are not due for another appointment with his specials until late in July but we have been keen to try and make this earlier but only in the last day or so have we been able to feel like this is possible. Julie has been blocked up with flu an last Thursday being my 40th birthday none us were well Francesca include and so we had a quiet day together. We have managed t make contact with two new carers to help us with Elijah, on was able to help us last Friday and the other on Saturday - we were getting pretty worn out and were grateful of the respite and both will be able to help us on an ongoing basis. This is a bonus for us on top of the help we have with Elijah on Mondays and Tuesdays. This has made a tremendous difference for Julie, being able to rest or get out of the house on these days. It's Francesca's 6th birthday tomorrow - boy don't your kids just grow up so quick - and so my mum is town from Dunedin - she arrived by plane tonight and will be with us for a week. It's a couple of years now since she last saw the children and so it will be good for them to have the time with her. I think she will be really surprised by just how much Elijah has grown and certainly how active he is. My mum has had a couple of strokes and so it's not super active and so it will be interesting to see how she reacts to Elijah wanting to climb on her. We'll see - hope to post some photos of Elijah and his Nan.

The other exciting things is locally the Canterbury Angelman Syndrome support group have gone live on the web and to date in June we have had 118 visits to the site. www.angelmansyndrome.org.nz I am working with another local to develop it

"I don't ask why anymore - it only leads to despair and consumes emotional energy - what I do know is that special parents are gifted with special kids to share their lives with" - Darren Humphries

2007-06-04T23:10:00.000+12:00

This weekend was a holiday weekend here in New Zealand, Queens Birthday weekend, which was a good opportunity to catch up with a few people. We caught up with a couple of other Families with children with Angelman Syndrome. One of the families have a little boy who is a little bit olde r than Elijah and his dad is helping me with the website design, we hadn't caught up with them for a while so it was good to visit and compare notes. Today we visited with another family who have adaughter with Angelman Syndrome. Her mum has helped us by making some night clothes for Elijah. As you know we have had alot of challenges with sleeping and Elijah getting into his nappies and things. She was able to make us an inside suit and an outside bag that we can't get into and so we are hoping for a good night's sleep for both Elijah and ourselves.

Until next time

2007-05-31T23:30:00.001+12:00

Wednesday saw Elijah have several clusters of seizure in the afternoon well about 30 in a 3 hours period. Not sure what brought them on - he went to sleep early and slept pretty much through the night and nothing out of the ordinary today. We will just need to keep an eye on him. Julie is also still keen to get his ammonia levels tested the Specialist has refused once but we can always ask again. And I will try and contact him tomorrow being Friday, Although I have to confess this is always a challenge.

The exciting new of the week is that the we - the Christchurch Angelman Support Group have gone online @ www.angelmansyndrome.org.nz the hosting of the site is being sponsored along with the domain name registration as well. This is a great opportunity for us be in cyberspace and link with other families in New Zealand and also internationally.

Next week we have a meeting of the support group and will be watching a presentation about the genetics of Angelman Syndrome from the AngelmanNZ conference earlier in the year.

Until next time

2007-05-26T23:37:00.000+12:00

It' been a reasonable week for Elijah, no more significant seizure since last week and we have had no change in his medication. We have however noticed that Elijah seems to be having some seizures as he goes off to sleep a couple of people posted on the Angelman Listserve talked about their kids having twitching/myoclonic seizure as they go off to sleep or in fact during their sleep. We have noticed since the last couple of big clusters of seizure he has had in he last 10 weeks elijah is having these. We recognised he "twitching" as seizure activity when we watched a DVD about Angelman Syndrome and the section on seizures shows a little girl with the twitching - fingers, toes, hands and feet. :Last night when he was awake at 2am I noticed he was having the twitching as well both when he was awake and after he closed his eyes as well. This is something that we need to talk to the Specialist about as I wonder if this is partially why he wakes up during the night apart from just having a full nappy. I wonder how much this activity is going on during the night. We might also try and get some overnight video footage.

The other thing we are considering is a wireless camera for his room so we can observe him easily either via a monitor or record his sleeping or not sleeping for our records or presenting to medical staff. The gear will will cost $3-400 and so we are exploring some funding avenues for this.

TBC..........

Darren

2007-05-18T23:04:00.001+12:00

Friday
I am happy to report Elijah slept through - he night albeit drug assisted and also Thursday night - he usually only sleeps through -4 out of seven. Happy to report that Elijah has been seizure free today and full on as ever. We are sort of in recover mode. No changes to his medication at this point in time. Dr says not sure it was ingestion of the laundry powder even a little would bring on the seizures - but no other clear explanation to date - not always helpful but the Lord knows. He has however developed a bad case of hives also all over hi body - Dr says nothing to worry some type of allergy - haven't tracked it down. we are giving him some low doses of antihistamine to stop the itchiness.

Well it's been a wonderful day today to balance out the week 1) Julie and Elijah came with me to work today for a meet and greet - the people at my work have been wonderful in supporting our families adventure to the Angelman Syndrome Conference in Australia in October and have raised more than $1000 for us. This was an opportunity for those helping us to meet Elijah. He left his impression - hugged lots of people and had lots of fun in three floors. Then we we took delivery of a new car seat, buggy highchair and walker for Elijah all funded by through Ministry of Health and a bed is on the way as well - all of these things will make life so much easier for us caring for Elijah making life easier for us as well. They are just so wonderful. we are truly thankful - will post pictures soon

On the Journey - till next time
Darren

2007-05-18T23:03:00.001+12:00

Elijah was in the hospital on wednesday with seizures - not sure what the cause was today - perhaps the particularly warm temperatures may have set them off but plenty of them, this was coupled by Elijah managing to ingest some laundry detergent - just a little that has spilled down the side of the washing machine - this little boy is so quick to try and keep up with and it's always a challenge and managed to get some to his mouth before he was discovered. He was treated by Julie with some milk as recommended by the outside of the detergent packet. We had some friends take Elijah and Julie to the hospital Emergency dept and I met Julie there from work. Francesca was able to stay with some other friends until we came home this evening. Elijah has a good number of full on drop seizures before going to the hospital and a number on the way and continued to have quite a lot whilst at the hospital. Thankfully the doctor we saw at the hospital in the Children's Acute Assessment dept knows us and Elijah - is one of the paediatric registrars who we have seen in clinics with Elijah's specialist. The decision was to treat him with diazepam a drug that helps to break clusters of seizures and his meds will be reviewed in the morning. It was quite a day today and we are hoping for a good night sleep for him. We waited and hour after he had this med and we will have to see what tomorrow brings. It is only just on a month since were last at the hospital with seizure and so we are hoping for some reprieve in the coming weeks.

We are learning it takes special people to take care of special people

2007-05-16T23:29:00.000+12:00

Just a note to let you know that Elijah was in the hospital today with seizures - not sure what the cause was today - perhaps the particularly warm temperatures may have set them off but plenty of them, this was coupled by Elijah managing to ingest some laundry detergent - just a little that has spilled down the side of the washing machine - this little boy is so quick to try and keep up with and it's always a challenge and managed to get some to his mouth before he was discovered. He was treated by Julie with some milk as recommended by the outside of the detergent packet. We had some friends take Elijah and Julie to the hospital Emergency dept and I met Julie there from work. Francesca was able to stay with some other friends until we came home this evening. Elijah has a good number of full on drop seizures before going to the hospital and a number on the way and continued to have quite a lot whilst at the hospital. Thankfully the doctor we saw at the hospital in the Children's Acute Assessment dept knows us and Elijah - is one of the paediatric registrars who we have seen in clinics with Elijah's specialist. The decision was to treat him with diazepam a drug that helps to break clusters of seizures and his meds will be reviewed in the morning. It was quite a day today and we are hoping for a good night sleep for him. We waited and hour after he had this med and we will have to see what tomorrow brings. It is only just on a month since were last at the hospital with seizure and so we are hoping for some reprieve in the coming weeks.

We are learning it takes special people to take care of special people.

Darren

2007-05-11T13:58:00.000+12:00

Well the last two nights have not been flash nothing like a broken sleep - Elijah was awake I we both were up with him Wednesday night, Thursday night Elijah woke and Julie got up to him @ 1:30 and then Julie asked we to get up to him after that. I partially woke up and got as far as getting part of the way out of bed as i heard him crying - I have no idea what time that was but I didn't make it any further and I guess he just went off to sleep because I do remember being cold and pulling the covers back over me and went off to sleep.

As previously mentioned we have now some great respite for Julie - 10 hours a week called Home Support and then 36 days carere support to last us through to February - which is still about 1 day a week if we need it. The lady who has been helping is just great with Elijah and also with Francesca and lives locally. We have two other agency lined up to helpus but have not yet identified anyone yet.

Until later Darren

2007-05-08T23:51:00.000+12:00

I am happy to report that we are almost one week reducing the Clobazam without thee return of seizures or any adverse reactions - which is fantazmagorical !!!! We still have been having a bit of a battle with sleeping - he has slept through 2 out of the last 5 nights although I happy to report that there is relief on the way. Last Saturday Francesca and I went to see a family in Christchurch who also have a child with Angelman Syndrome. She has offered to make some sleeping clothes for Elijah. We took with us the sleeping suit that he has and manages to get out of and also the sleeping bag that we put him in as well. We had some discussion about what would work best, Trish then took some measurements some photos and said no problem she could make them for us no problem. What a blessing ! No more trying to put safety pins where he can't reach them and him getting into his nappy - this sounds like bliss and the opportunity for more sleep - yeah.

Also I Am most delighted to report that our fundraising for the whole family going to the Angelman Syndrome Confrerence in Australia in October has had another boost we are looking like we will clear 300 on the lamingtons and we were given another 500 from my work - To be continued

2007-05-03T17:25:00.000+12:00

I spoke with Elijah's Neuro yesterday and he agreed to in light of abscence of "viral infection" that we could reduce the Clobazam medication that we were giving him for the seizures cause by the infection. So we will reduce by one dose each day and then after one week we can give it away completely. At least this will be one less medication to have to give him.

I also asked him about testing the Ammonia level in Elijah's blood, which I had asked him about before - he seemed a little hesitant but agree to have his blood tested when we were next in - which turns out is not until July - we had read that raised ammonia levels can cause issues like seizure activities.

more to follow

2007-04-30T22:50:00.000+12:00

Tonight is Monday - Last night Elijah woke at 10:30 and the last I heard of him was at 12:30 - he was dry and safe - not sure what time he went to sleep - at some point in time - he slept well this afternoon for several hours = he was tired. We have a new person providing care for Elijah - this is just Fabulous and we are using our carer support days at the moment - to give Julie space as well as giving our new carer T an opportunity to spend time with Elijah and also to meet the other people who look after him as well. T and Elijah get on like a house on fire for which we are grateful and so she is helping Julie with Elijah almost every day this week. Julie and I enjoyed having lunch together for the first time in a long long time and then we got the phone call to say Francesca had been pushed of the pay equipment at school and she now has a broken arm - this is the second in 8 weeks except different arm. It's a day at a time - Saturday night/Sunday am was relatively uneventful with Elijah - although Friday night/Saturday am was just horrible - he woke 12:45am - runny watery yukky pooh through everything - had to get Julie up to give me a hand - got him into the bath to clean him off and I had to deal with his bedclothes - and managed to loose a good portion of my dinner = vomiting - I have never ever had to deal with such a foul and awful disgusting smell in my entire life. It's really hard to do things with one hand - might have to get one of those clips that the synchronised swimmers have. I am so glad that we recently invested in disposable gloves and so with the help of half a bottle of disinfectant I was able to rinse the clothes in hot water and get them in the machine for a hot wash. Then I had to stitch up his other sleeping back (with fishing line) regular cotton is no match for our boy. Got him into bed and last saw the clock at 2:30am.

We are still waiting to here from the specialist about the seizure meds - if we keep the Clobazam a the same level - measuring his ammonia levels etc - patience is a virtue - however I will be on his case in the morning - till next time

Darren

2007-04-23T09:36:00.000+12:00

Monday
Elijah slept through the night - yeah - well from 7:30 - 6:30 @ least and so we are a bit happier today although Julie has a bad dose of the flu - it's only a fortnight since she was unwell before over Easter - me thinks it's just because she's some what rundown.

Tuesday - Elijah was awake last night and I was up with him 11:30 and 12:45 and 3:45 and this morning he didn't sleep this afternoon and so was quick grumpy but went off to bed early tonight God willing he will sleep through tonight. Julie had some respite this morning and Francesca has been going to a friends after school for a couple of hours just to ease the pressure in the house. I went to work today. I learned today that in the last month my collegues have raised just shy of $500.00 towards our fundraising for our family to go to the Australian Angelman Syndrome conference in October which bring the total to about $700.00. This is just wonderful - we are hoping to bring Elijah into work in the next week so that people at work can meet him.

Tomorrow in New Zealand is ANZAC day the day we remember our war dead and those who fought and did not return and so it's a public holiday here. I don't think I will make the dawn parade @ 6:30 as I have before but will take Francesca to a citizen's service in Christchurch Cathedral @ 10:00 am - here's hoping for a sleep through.
Darren

2007-04-22T03:16:00.000+12:00

well you know the song "Time warp" from the cult Rocky Horror Picture show , well if you don't the opening lyrics go -
Riff-Raff: It's astounding,Time is fleeting,Madness take sit's tollBut listen closely
Magenta: Not for very much longer
Riff-Raff: I've got to keep control, I remember doing the timewarp, Drinking those moments when The blackness would hit me
Both:
And the void would be calling
All: Let's do the Timewarp again, Let's do the Timewarp again

It's 3:27am and all is well and I am up - just about lost the plot this morning - Elijah was awake @ 10:30 last night with a wee and this morning @ 2pm pulled all his clothes off and weeeeeeed everywhere ans refuses to go back to sleep. I really don't get it - it's the middle of the night and I would expect him to be tired - for goodness sake I am and I have to confess I yelled at him out of frustration - Julie is blocked up with flu and so it's all pretty crappy in our house at the moment.

Will have to get on the phone later this morning and get some help cause we are not coping really

Darren

2007-04-21T12:08:00.000+12:00

Happy to report only a couple of little seizures yesterday - Friday and he slept from 7:45 - till 6:45am this morning - now that's sleeping through the night. Well 6:45 was when I heard him. I have just put him off for a sleep and he is obviously still in recovery mode a bit like Julie and I. Thursday saw some seizure and Thursday night he was awake at 4:00 and did not go back to sleep. so Friday was a long day. I did go to work for an hour and needed to come home, I was pretty trashed and just couldn't quite face the day.

Talked to the specialist neuro yesterday and we will keep o the Cobazam until at least after the weekend and review moving him off it and review the whole seizure thing. We also asked if we can arrange for his ammonia levels to be checked and if high we could treat this to help reduce seizure activity - he is going to check this out as alcatine is not available in NZ. Likely we will have one in the next week. He is also going to follow up with the Children's Acute Assessment department as to why Elijah did not receive the care he needed for the 15-20 drop seizures and hour and why we did not see a doctor apart from the one who was there when we arrived but left @ 7. I will be checking with with him when we talk to find out the explanation.

Not the first time we have not be treated well - like when he was having like 200 drop seizure during the waking hours and hadn't slept for 2 whole days and the registrar doctor says - "seizure and lack of sleep are not related to one another and I'm not sure they are seizure after hearing our desciption and was not willing to spent 5 minutes watching the video I had taken" We were like and what planet are you on - she talked to the specialist who confirmed what we had told her and she admitted that we were right although she did not tell the specalist the amount of seizures he was having - neither did she note that - we know coz we have a copy of his hospital file. - hello

Julie is not flash today and so I have been looking after Francesca and Elijah today - doing ok have developed a new way to get him off to sleep - ear lobe massage. - until next time

2007-04-18T20:47:00.000+12:00

About 45 minutes after the last post Elijah woke and did not sleep until about 9am this morning. This was a result of alot of seizure activity I gave him another does of melatonin @ 12:30 and also the antihistamine that we had been prescibed by the Family doctor to knock him out seems like this had the opposite affect- I rang the hospital @ 3:30 and took him in. I was able to get some of the seizure activity on video camera, along with the drops he has startd having othe seizure like absence but lying down blank stare and finger and feet movement - not jerking but more wriggling - these last 10-12 seconds at a time.
He was having about 30-40 an hour of the drops and partial drops. The Children's Acute Assessment won't see him straight away but had to go via th emergency dept. Recently we got hold of a copy of all his hospital notes and have them in a file and so armed with this, my notes on his seizures, and my video camera I high tailed it to the Hospital - at least there is not much traffic on the road @ 4:30am. We presented to the emergency dept and the nurse at the reception was pretty helpful and got us through to the ED quite quickly and so I described what was happening - temp was normal concern was lack of sleep and the frequency of the seizures. Was told we would go to CAA and so gathered all the stuff - i was prepared with change of clothes, toys, sleeping suit the whole lot - we have learned to be prepared. The Dr came after a short time. I described the situation and he was of the opinion that sedatives may have had the opposite effect alongside of a viral infection. By this time it was a bit before 7 and the ward was quiet - one of the nurses gave me some respite so I could update Julie, turned out my cellphone battery went flat and so I shot home to get the charger and got some breakfast on the way back to the hospital. To be continued

He is now asleep and has Clobazam added to his meds at least in the short term to keep the seizures in check. here's hoping for a good night sleep - our neuro will call us to touch base on Friday morning.

Off to sleep for me

2007-04-17T22:32:00.001+12:00

Well the saga continues, yesterday saw the beginnig of drop seizures and we were unsure if this was just because of his runny nose and a bit of a cough or due to the waking up @ 4 and 5 in the morning. We probably thought it was the later rather than the former and made an appointment for our family doctor for Elijah - hoping that the Dr might give us something that would help knock Elijah out so both he and both of us could get a good nights sleep. His temp was fine this morning although about 20 drop seizures before going tot he Dr some full on the others half. Got to the Dr and in the sapce of 10-15 minutes his temp had shot up to 38.5 and so the Dr gave him some panadol, gave us an antibiotics even though we suspect it maybe viral - ah it always seems to be and a sleeping medicine that knocks him out - I forget the name and it's too late to go to the other room to check. He slept 90 minutes and more drops throughout the afternoon. - gave hime the meds and food when i got home and pout him to bed. We will have to see how tomorrow is......and so it continues..Darren

2007-04-13T00:03:00.000+12:00

I was hoping that my next post would have brought good new on the sleeping front however the good news is that he is sleeping, just not through out the night. He has not slept through the night all week and has been awake at say 11 and gone back to sleep but then awake @ 5 or last night was awake @ 11pm 2am and then from 5am and manged to extricate himself from his sleep gear an proceed to shred his nappy - early morning entertainment and Elijah himself would say - well what else apart from a couple of toys do you want me to do @5am in the morning - surely not sleep ! So tonight we have increased his Melatonin and so far so good - just gone midnight else we might have to seek something that is going to knock him out - not just for his benefit but for us as well. Julie is having someone to look after the kids between 10am and 4pm tomorrow - so she can rest. I am not clear of my cold and so am still a bit weary as I have been up with Elijah as well this week. Most of last weekend was spent in bed or looking after the kids. We did get a couple of trips out - one that included visiting my former manager and he husband about building a bed for Elijah and so the Tech institute he is at is on semester break and so it will be a couple of weeks until we know more. The other was to a place called Gethsemane garden - a local private gardens - wonderful peaceful place we'll go back we did get some photos and the following are some pictures of our sleepless, Houndini - our young man. Sleep Rules

2007-04-07T23:14:00.000+12:00

2007-04-07T09:27:00.000+12:00

What a last few days it has been - both Julie and I are exhausted, were both have some coldy flu runny nose cough etc - I had Wednesday off work and went back Thursday but still far from 100%, Wednesday night Elijah - woke @ 11pm - managed to extricate himself from his sleeping bag suit and had weed everywhere wand so I the problem was that he has ripped the stitching off the other sleeping bag we put him int. We had bought it and had the zip removed because he was managing to get it undone.) It is now a small zip at the bottom) and this was completely stitched up the side and he ripped the stitching completely down the seam. I first started to stitch it up with cotton and this keep breaking as I was trying to do it tight as I could (by hand @ 12 by this stage) then do you think he would settle into the washing machine with the sleeping bag and sheet, gave him some more Melatonin, and thought he was secure, 60 minutes later (now-about 1:50) more crying found I think that I forgot to safety pin the zip and would you believe it he still had wee in him and so another wee a small one at least, you know what I did I changed his nappy and got out the hair dryer and dried off the sheet in the cot and the sleeping bag without taking him out, he sound it quite amusing - I was not by this point in time. left him, 30 minutes later - more crying and he has managed to jam his arm into the sleeping back how he managed that I'll never know there was barely room to get his arm in the armhole - ah well his feats are mostly impossible - extricated his arm and more Melatonin - well didn't have anything else and I left him heard the last of him about 2;45. what a night.

Thursday was a reasonable day, during the but with Elijah woke again @ about 1:30am and then was awake @ 6 am . It's almost daily been a battle keeping him both in his sleeping attire and I have to confess that safety pins are not quite what they used to be mind you Elijah is pretty strong and I fear this strength will only increase. We are hoping however that he may soon grow out his need to constantly try to get his nappy of especially via wriggling and contortion, I never cease to be amazed at how he can get his nappy of and then want to leave deposits around the house as well.

Both Julie and I have been unwell with coldy fluey stuff and so it means that we have even less energy to keep up with him and of course many other folks with AS kids will know our kids can take some keeping up with. Julie called me this morning (Saturday) low and behold our wee man was awake and it was 2:15am. Another change of nappy a top up of Melatonin and he slept until 6:25 when I got up to give him some toys to play with. I was happy that when I went back to him and hour later he was secure -whew.

We have had some plans for a bed arrive from the USA and I have yet to talk to the husband of my former manager at work who is going to look at them and see if we can build this bed for Elijah. Here's hoping we may feel a bit better in the next day or so (Monday is a holiday here in New Zealand) so we can drop the plans off and hopefully visit a couple of other families locally who have children with Angelman Syndrome.

I guess the reality that everyday will have it's unique challenges with Elijah is settling in my mind and in reality I think these challenges will change rather than go away. I am consoled by the fact that Elijah never looses his sense of humour even at 2:30 or 3 in the morning. The challenge for us is working on strategies and practical options that make these easier for him but also for us as a family.

One never got burnt looking on the bright side of life.

Peace be to you and yours - Darren

2007-04-05T00:24:00.000+12:00

Well happy April 2007 folks, this last year has flown as it is coming up to one whole year since Elijah was diagnosed with Angelman Syndrome. What a year it's been for us! a year of grief, challenge, some steep learning curves, lots of joy, heaps of hope. We Julie and I are finding our selves needing to continually educate ourselves about Angelman Syndrome, genetics, neurology seizures related matters. There is just so much to learn, and take in and understand and also to act as a catalyst to help educate others. The Listserv for angleman syndrome and the angelman forum (http://www.angelmanforum.org/ ) have helped us a long way in this. We have found ourselves in dialog and discussion from folks across the globe and better able to dialog with Elijah's medical specialists. Still along way to go, but blessed by every minute of it, even the tough ones and there are plenty of them to go around.

NEWS - A new car seat is on order and will be here in 5 weeks - Elijah is too big for the one he has been using - was originally his sister Francesca - this one is being obtained through his Early intervention team - is more difficult for him to houdinise. Also a walker to help Elijah and a new buggy - with him in mind (cause he is getting quite heavy now) and a high chair that is better suited to his needs - again so that he can not houdinise it.

Bed - well we have just taken deliver of some plans for a bed generrously supplied by Walter Smyth who lives in Exeter - NH - he designed and built the bed for Nicholas Swanton - see the following link http://www.seacoastonline.com/2005news/exeter/09232005/news/64442.htm
he has generously sent us the plans and we have a contact in a local technical institute who is a tutor of building and carpentry who is going to look at the plans and see if they would make it for Elijah - this could be at no cost to ourselves. Wooohoooo wouldn't that be great - must fly

until next time - take care Darren

2007-03-22T22:08:00.000+12:00

almost two weeks ago Julie and I were able to attend the first Angelman New Zealand conference - held in Hamilton (which is in the North Island) some folks from the Christian Community we are part of got together and and gave us $1000.00 which was able to cover our airfares and registration for the conference. to be continued..

There were 40 people registered for the conference and 7 or 8 were professional people, teachers and other staff who care for children with Angelman Syndrome, the rest were parents or family members. There were 19 children and of those 10 of the Children has AS and were of a variety of ages. The Friday night was a relaxed time after the drive down to meet folk and relax. Well probably like every one else we immediately felt at home a bit like meeting the extended family. The great thing was that there was representation of 4 families from Christchurch.

There were 3 main presentations - one by Dr Elle Smith who is a geneticist from the Angelman Syndrome Clinic in New South Wales in Australia who gave a most excellent presentation about the genetics of AS complete with Powerpoint presentation - I was able to get most of this on video, this was just great. Julie had a couple of questions to ask one ws about her opinion of a mouse model that reduced the impact and symptoms of AS and she responded by saying that she was not aware of it at this point in time and suggested that perhaps we were up with things happening internationally more than she was. This was something that we found to be true with discusssions with other folk - we are reading and researching on a daily basis to gain a better understanding about whta is goin on in Elijah's body and the effects of AS on his brain and development.

To be continued.

2007-02-03T00:53:00.000+13:00

well the week has shot by - it was last sunday morning shortly after 5am that both Julie and I woke with the bang of something from Elijah's room and so I leapt from the bed and in his boor to find him flat on his back and beginning to cry. This was followed by some significant seizures drop seizures, absence and general. About 50-60 through from 5:30 to 7:30. I rang the hospital at 7:15 for some advise and the Doctor suggested bringing him in as soon as possible and so I put him in the car and went as quick as a could into the hospital I was there in less than 15 minutes and took the Roman law approach when it came to the stop lights. We went straight through to the Children's Acute assessment where they were waiting for us. The put an IV in and game him diazepam to stop the seizures. This was quite a challenge as he is both strong and active and wasn't that ready to have a needle in his hand and so there was lots of tape. The diazepam took almost and immediate effect and he was pretty drowsy. The doctor told me that because of the number of seizures they may have just been set off by the hit to his head or if they continued it could be as a result of a brain trauma. To be continued.......
20/03/07
After several hours Elijah still continued to have some small seizures and so they did a CT Scan which thankfully showed everything to be normal - they told us we should watch him over the next 24-48 hours to make sure he was ok. So we were much relived and so are in the process of looking for a more secure bed as well...

2007-01-23T22:59:00.000+13:00

well I have to confess that this week has been a quiet one - Elijah has only been awake once during the week - One of the things I haven't mentioned is that Elijah features in the calendar of angels that was produced before Christmas - and also there is mention of this blog. Daniel another local angel also has his birthday in the same month - February and hi picture just about next door this was a great project and the Calendar are just fab. It's great to see the name of angels that appear on the angelman forum or on the listserve.

2007-01-15T23:58:00.000+13:00

In December Tobias, Elijah Markus and Elijah attended a Special Children's Christmas Party. This is sponsored by a number of local radio stations and a finance company. It is a huge party held for children with special needs - there was fresh fruit, juice icecream facepainting bouncy castle entertainment , even Father Christmas and presents for all those attending, here are some photos from the Christmas party - better late than never.

Elijah's Face Painting

Elijah and a pirate

Elijah and his computer gift

Tobias and Elijah enjoy bananas

2006-12-29T14:25:00.000+13:00

We went to see my Paedeatric Nuero on the 19th of December and started by talking with one of the registrars updating him on how I have been in the last couple of months in particular the new seizures I had and that I was unwell with the viral throat infection and high temperatures.

We asked if the new types of seizures the tonic clonic and the other one were only likely to occur when Elijah was unwell. The specialist told us that it's not uncommon to experience several different types of seizures and that they would not be limited only to times when Elijah was unwell. We talked about managing the seizures when they occur and they will arrange of the epilepsy nurse from the hospital to meet with us in the new year to discuss the use of diazepam to be administered rectally in the case of long seizures. The Specialist has decided to reduce the clanonzepam that Elijah has been on and to increase the Epilim to 5ml twice a day to help deal with the seizures. So far so good although I am writing this retrospectively.

Since starting to write this Elijah is now had a couple of breakthrough drop seizures and so hi Epilim has been increased to 7ml per day. So far so good no more seizures to speak of and so things are generally going well.

2006-12-28T23:08:00.000+13:00

Well so many things have been happening my Dad has struggled to remember to keep my blo updated and so I think he will have to break it down into several entries.

Let's call the first one - THE PICNIC
I am happy that the weather held out for the Angelman Support Group Pre Christmas picnic - wow there were 6 families there and I got to meet a couple of friends I know Daniel Tobias and Ella, but I also got to meet two Charlottes - and my mum and dad and sister got to meet their parents and brothers and sisters too. It was great and I spared no time getting to know some of the other people and hugging them and climbing on them as you can see. The Picnic was at Spencer Park in Christchurch.

We all had a great time and will be getting together again in January for some more fun.

Me playing in the sandpit

Brent & Me

Me climbing on Trevor

Tobias and Markus Me and Mummy

Trish and me eating some yoghurt

2006-12-11T15:10:00.000+13:00

I have been having a happy time, as always, I now have had someone to look after me each week when mum takes Francesca swimming . Her name is Alicia. As you can see we have lots of fun together.

Alicia has worked with other children like me and she is quite a funny lady. I am looking forward to her looking after me.

This past weekend my Grandad and Novina came to visit and so it was fun to climb all over them cause i haven't seen then in quite a while.

I am looking forward to the weekend because I am going to a picnic in Spencer Park with other famlies who have children with angelman syndrome

To be updated.

2006-11-24T18:01:00.000+13:00

Still happy to report no more temperature in almost a week now and so the whole family are feeling a bit happier, although Elijah has been a bit fussy with food this week - he still has alittle bit of a runny nose.

This is a picture of Elijah and his sister Francesca a couple of weeks that I picked up this week it's a really nice photo - you can't see my hand up his back supporting him.

Well tonight at least 4 families of children in Christchurch with Angelman Syndrom - well parents will be meeting for a social and just spend some time together and share.

We now know of 9 families in Christchurch in Christchurch with Children with Angelman Syndrome. There seem to be a bunch of children all around the same age. Saturday week ago - to be updated.

2006-11-17T08:47:00.000+13:00

17/11/06 8:41

Well I was going to bed close to midnight on on Tuesday night - I had heard Elijah coughing and thought I would pop in to check on him - he was in his cot pale and having a seizure - not a drop or abscence seizure - but he was jerking - head, hands, feet - natura reactio pick him up, we managed to get a temparature - 38.3 and so 5ml Ibuprfen - this still coninue whilst I was holding him for between 10 - 15 minutes (I know the doctor said you shold have called and ambulance) following this he was very agitated and aggressive. we treid to raise some friedns on the phone to watch Francesca but couldn't get hold of her and so woke her up and got elijah in the car and went to the hospital - I rang them and they said they would see him only with a referal from another dr - (this should have been a prompt ring the amblance). So we went and thankfuly we didn't have to wait for too long. Still very agitated. Told the sory to the nurse who took stats - try getting a pulse o2 thingee on his toe - not in a hurry. Then explained the whole thing to the dr who also examined him, by which time he began to settle. then we went to the children's acute assessment. told the nurse the whole story and waited for to see a doctor - by now about 3:30 yah - I have to say Francesca was pretty good. By the time we had told the dr and she had examined him - it was about 4:30 and he was settled and lively. The Doctor was keen to observe him overnight - we told her that he was unlikley to settle at all and she agreed that we could bring him home and at least try and have him sleep in his own bed. So we came home and we gave elijah a little dose of Melatonin and he was off to sleep by 5am. I followed up with the the day doctor - and he told me that the urineg they sampled was ok - but suspected viral infection, although his throat was read this was not seen as the cause and we should watch and observe and come back if concerned no change to medication in the meantime. His temp was up and down during the day of 16th. This left us with questions like is this a new type of seizure that we are only goin to see with sickness? etc - we were told this would be reveiwed when we next saw the specialist and I told the Dr thta we had missed an appointment the previous week because Elijah was unwell.

16/11/06
Elijah work at 3:50am temp 40 - was still 38 @ 5 am after meds etc and managed to go off to sleep for a few more hours.
He woke with coughing

TBC..............................................

23/11/06
In the mean time the fever has broken and apart from a cough - no high temp in 3 days
D

2006-11-16T17:53:00.000+13:00

Greetings from a very warn out and tired Dad.

Elijah has had a runny nose for the last 2 weeks now - you will have seen some of the info in my last post well - it hasn't improved any in fact on the Tuesday and Wednesday - he along with his sister had diahorrea - and Mum had vomitting - at least the temp was down for a bit Although on Wednesday night Elijah started having a high temperature again - 37/38/39 on Thursday it was up and down and he started to have drop seizures - yeah - I took him to the Doctor on Friday morning and she said just viral and not alot could be done apart from ride it out. Well his bowels have settled down but the runny nose and the temperatures didn't over the weekend. The Doctor said on friday that we could probably increase the clonanzepam to two drops twice a day in the mean time to combat the drops (we have since heard from the dr at the hospital that they try not to change the medication during this sort of time) - ah well what do doctors know - we only entrust them with our life and health and those of out loved ones - said without trying to sound cynical well too cynical.

The weekend did not see anymore drop seizures and so we did not do anything with Elijah's medication, but regular temparatures reducing routines - know them backwards now. Now let me think what day is it - well it's Thursday now in New Zealand. Monday and Tues Elijah began to have some little drop seizures nothing too big but little clusters - Tuesday night Julie rang me at work as Elijah was having some more intense seizures and abscence - with bubbles in the mouth - and becoming semi consicous. Kept and eye on things

More to follow

2006-11-08T12:22:00.000+13:00

Morning One and all - this last 5 days has been crazy in our house - Elijah was running a high temp from last Thursday - 39.5 F- meant that he was a bit shakey he has just had ablocked up nose - a bit runny - didn't go swimming on Saturday morning - his tempo was up and down. the temp was up to about 40.5 - which is hot = lots of baths to cool him down.

Saturday was also a really hot day as well that doesn't help much. About 4:30pm he became clingy - I went into the office to get something - he followed me and then without warning a big vomit - took his temp 40 - gave him some Ibroprofed - he wan't interested in liquid ad so I gave him a fruit salad - smoothy I had frozen - drank that - put hi in the bath and he was having some big drops and eyes rolling back in his head - a couple of times I thought he was going to lapse into inconsciousness. slowly his temp came down and stayed reasonably settle the rest of the day.

All I could thik of was - here we go again - in Jan he had vomitting and seizures on a hot day and ended up in the hospital - this was before we knew about Angelman Syndrome. I am pretty sure that the anticonvulsants that he is taking everyday - have gone a long way to help keeping any seizures in check that result from high temp.

Sunday was okish temp was a bit up but settled by the end of the day - Monday ok - Tuesday - along with his sister - elijah has a dose of diahorrea - yukky yukky yukky

Thankfully that only lasted yesterday and his body seems to have settled down. J his Mum was not well either and so that meant that I was home and got to spend a whole bunch of time with Elijah and also this morning - J has an unsettled tummy and so we had some fun times interacting this morning.

Whilst his temp was down Saturday MOrning we visited with a the family of Tobias - who is 3 and has Angelman Syndrome - Tobias and his family have recently moved from Germany to live in Christchurch. Tobias has a sister who is close in age to Francesca and they had a ball.

Well folks until next time - peace be with you and yours.
Darren
Father to Elijah - Angelman Syndrome Del + New Zealand

2006-10-30T23:03:00.000+13:00

I am happy to report that life is attempting some degree of normality. In the most Elijah is now happily sleeping through the night on his lowish dose of melatonin. He has had a couple of night - like last Friday where he work about 10:45 and I last heard him about 1:30am. The reason I didn't hear him anytime past then is that I fell asleep on the couch. Elijah had stopped making noise by the time I woke up or was woken up by other members of the household stirring.

I have to confess that since then I could myself over the weekend getting out of bed to go to Elijah and realised that when my feet hit the floor that I was dreaming, but was getting out of bed in real life - figure that one out. I stopped and listened and in reality there was not noise and so back to sleep. It has taken some getting used to having a full nights sleep - as it's been so long and I know there are folks who will read this email and nod theire heads. There will be others who will be eternally grateful to the Lord, who allowed them access to melatonin and hence preserved their sanity. "It's life Jim but not as we know it." This sleep for Elijah has also meant that along with the meds his seizures are well and truly under control.

I am also happy to report that there are now 8 families in Christchurch with children with Angelman syndrom including a man who has travelled half way around the world from Germany with his family. I met this friend when he wa visting Christchurch - he got my contact details from www.anglemanforum.org and sent me an email - we we able to have some good time togther sharing about Angelman Syndrome as his son who was back in Germany had recently been diagnosed. We hope to have a get together of parents later this month and maybe a gathering with kids before the end of the year.

Well until next time - health to your enemies enemies and peace be upon you and yours
Darren
Father to Elijah - Angelman Syndrome Del + New Zealand

2006-10-17T00:39:00.000+13:00

I am happy to report that all is going well in the Humphries household. We are up for #6 full nights sleep. I'm the one who is up late tonight trying to keep up with all of the correspondence and business. The small dose of clanonzepam seems to be keepin ghte seizures at bay - thaks be to God. This certainly has been and answer to our prayers and we know that we have bunch of people praying for us and for Elijah during this challenging time and the Lord has been answering. Elijah started some hydrotherapy this past weekend and this went well - we go a to a small local pool - www.miniswim.co.nz and he majority of people going there have special needs. Elijah had a ball. The picture is of Elijah at the botanical gardens.

Well folks that's all to report today - a short but sweet post.

Darren
Father to Elijah - Angelman Syndrome Del + New Zealand

2006-10-09T22:40:00.000+13:00

I am happy to report that the weekend was reasonably unevenful - in terms of seizure activity and so we have stayed with a low dosage of clanonzepam this is having it's desired effect I am happy to report this and have been hoping and praying that it would be only shortlived. The sleeping still continues to be cahllengin last night he was awake from 10:30 - 3:30am. I learned tonight of some slow release melatonin and so will have to follow this up. I have just learned of another family in Christchurch who has a boy who has angleman syndrome - this bring our merry band of angels to 6 confirmed. 3 families met late last month and had some time to share and our kids to meet - we will look to meet again in November.

Until next time peace be to you and yours - health to your enemies enemies.
D

2006-10-05T09:57:00.000+13:00

The Melatoni seems to be working well - apart form the weekend when it seemed like it was only every other night that Elijah was sleeping through, he slept through Sunday, Monday night he woke, Slept Tuesday, Slept Wednesday.

On Monday we though we saw waht was an increase in drop seizure for Elijah, by Tuesday they wer more frequesnt and byt Tuesday afternoon were full on drop seizures, and so we talked with the Dr and she has suggested back onto a low dose of the clonazepam, not as much as we had before, but at least enough to get the seizures under control. We satrted on that yesterday and will continue and see how much difference it makes.

We are glad to have had the protective helmet made for him. We didn't have need to use it initially because it seemed like the drops were under control but now we are having Elijah wear it during his wake hours to protect his head. I took yesterday off work as a mental health day - the lack of sleep and onset of seizure needed some mental time out. Today is a planned day of leave and so will enjoy it. Elijah is not at preschool yesterday and today just until we see a change in the seizure behaviour.

Above is a pic of Elijah with his helmet on

By the grace of God go we - until next time

2006-09-29T16:40:00.000+12:00

It works

26/09/06 Night One on Melatonin - gave Elijah .3mg of Melatonin - 20 minutes before bed - he went off to sleep without any fuss and he slept through the night until at least 7:30 am. I got up at 7:50am - how fabulous.

27/09/06 Night Two on Melatonin - gave Elijah .3mg of Melatonin 20 minutes before bed he went off to sleep without any fuss and he slept through the night until at least 7:30 am. We all slept in till 8:20am shock horror.

28/09/06 Night Three on Melatonin- gave Elijah .3mg of Melatonin 20 minutes before bed he went off to sleep no prob he slept until 2 and work and then again at 4:15 - I got up to him at 4:15 and changed his nappy which was full. I left him and with 30 minutes he was back asleep and was still asleep at 8am this morning. He usually wouldn't go back to sleep and so this was a bonus.

Because it is school holidays for this week and next week, Julie spent Wednesday and Thursday Morning with Elijah at the preschool and Francesca went well. Elijah is now with the over 2 children. Julie came home quite exhausted both days as he was justa ball or energy - no stopping.

Until next time

2006-09-26T13:59:00.000+12:00

I collected the presciption for the Melatonin this morning before coming to work and so we will be trialling it this evening to see how it goes. We have been looking forward to this day for almost 3 weeks now and so are happy this day has now arrived. Funnily enough last night I didn't put Elijah's heater on he slept through and so perhaps the temperature of his room is going to make some difference without freezing him. It is spring and so the days in the last week or so have been warm.

We had a great meeting last weekend with 2 other families with "angels" here in Christchurch. It was a great opportunity for the parents to talk with one another and compare notes and stories and encouragement. It was also a good opportunity for our "angels" siblings to meet and interact with one another. There were two other families who were unable to be with us and so hope that in November we will all be able to meet up. By then there will also be a sixth family resident in Christchurch.

Julie has also enrolled Elijah in some swimming lessons and hydro therapy - this will start in October and will run for about 12 weeks. I am sure he will both enjoy and benefit from both of these. It is school holidays at the moment and so Elijah's Support worker will not be at the preschool this week and next week and so Julie will be attending in her place.

Overall we are a happy family with things on the siezure front and we are looking forward to some good nights sleep ahead - yeah

Until next time.
Darren

2006-09-21T21:38:00.000+12:00

Great news - today our GP wrote a presciption for melatonin for Elijah - made my day even before I got to work this morning. Julie rang the GP and she said it's worth a try. This will be suspended by the chemist as elija is aunbel to swallow tablets and will make it easier for him toi take in liquid for. We will have our first dose tomorrow night once collected from the pharmacy.

Here goes and hoping and praying it will have the desired effect - as and hour after beign put of to sleep he managed to ping one of the safety pins on his overall suit get his hand in remove his nappy and wet him self his clothes and the sheet - good job the matress is covered. And still he was a live wire - this picture is Elijah very very late at nght and ready to party. Peace be to you and yours - Dad

2006-09-19T17:35:00.000+12:00

Gretting one and all

And so the saga continues - funny it's almost a week and no word from the specialist. This whole sleeping thing is now becoming crazy. I have managed to find a presentation - Sleep Problems in Individuals with Angelman Syndrome - given at the International Angelman Sydrome Organisation Conference in 2001 by Joseph Wagstaff - (http://asclepius.com/iaso/wagstaffsleep.html and associated study and so have sent this to the specialist supporting our request for trialling melatonin - hoping to hear from him soon. Julie is going to see the GP tomorrow and so will also take the same information and will be requesting melatonin from her as well - nothing like a dual pronged approach.

The funny thing is that in the midst of it all Elijah is the one who most all has no problem keeping a sense of humour.

I think our kiwi ingenuity has managed to put and end to the escapism that we had a bout of and we will be making contact with a seamstress soon to work on some night time clothing for Elijah for the Summer, which is not far off. The spring has brought with it warm weather and so we have been able to make the most of this with trips to the park - Elijah has enjoyed getting out in the leaves and the dirt.

As previously mentioned we have a gathering of families with angels this coming weekend and we are very much looking forward to this and it will be good also for the siblings of our angels to have some time together as well.

Well until next time - may peace be upon you and yours and health to your enemies enemies.

2006-09-14T17:18:00.000+12:00

Well I finally tracked down the specialist - after much ringing and was almost ready to setup camp in the paedetrics department. I was able to speak to him in person and let him know how things were going with the medication - which he was happy about. I then talked to him about Melatonin - we had a discussion and he told me that the info out there is that it is effective with small numbers of children although some out there swear by it. He told me it was used for children who were blind who had difficulty distinguishing between the day and night and some people had had sucess for other kids who experienced sleeping issues. He told me that it is most effective for helping children go off to sleep but not of benefit for kids who wake during the night. And there cannot be alot done about that - some sedation meds possibly to help children reset sleeping patterns, but only in the short term and not in the long term. So he is going to do some looking into how melatonin interacts with the Epilim that Elijah is on and will be in touch. Well I hope that this is not too long before we hear from him.

The fun is that for us we don't know when Elijah is going to easily go off to sleep or when he is going to wake during the night or for how long. I hope and pray that at least the neuro may give the go ahead for us to trial the melatonin - this may restore some degree of sanity to our house.

I took Elijah to see the Opthamologist (read eye specialist) yesterday and that went well - Dr is very happy with how Elijah's eyes are and there are not any other ongoing issues for Elijah and his sight. He said if nothing has shown up by now tyhe chances of something developing would be quite low and so we will be in touch with him again only if needed in the future.

It's the week for specialist this week as I will take Elijah to the ENT Specialist tomorrow - read Ear Nose and Throat. Elijah is foever blocked up even when he doesn't have a cold and I reckon his nasal pasages are narrow and he snores like a giant when he is even a little blocked up - and so need to ge this checked out - I am imagining now how much fun it will be holdin onto elijah whilst the doctor tries to look up his nose - no problem with the ears and the throat - well al long as the Dcotor doesnt put his finger in Elijah's mouth he should be safe.

Well I talked with Julie this afo and Francesca has a high temp 40C and so this should be fun - she won't be at school tomorrow and so I will take Elijah by himself. Work have been very helpful and supportive to us particularly when we have appointments for Elijah

Until next time hoping to have a reasonable nights sleep.
D

2006-09-13T13:56:00.000+12:00

Sometime it just seems like all in life is a blurr and well this last week has been a bit like that. Whilst I was excited by the prospect of getting on top of the meds with Elijah this has all truned a bit to custard. BOth Julie and I rang the hospital on 5 occasions and then heard back from a nurse who looks after Eipilepsy and children who have seizures called and both Julie and I spoke to her at length. She told me that she would be speaking to the Neuro Team the following day and would be back in contact. Well it's been almost a week and we didn't hear anything. So I rang and learnt that in fact it was her understanding that the specialist Neuro was to have contacted us to talk about the seizure meds and possibly about some malitonin - to help with Elijah's sleeping. Well the last few says we haven't heard anything and well after the waking at 4:45 this morning feel a bit sad. He better look out we might have to setup camp in the Children Paediatrics dept until we see him. Mind a ray of hope - the mum of another angel in the city - who wouldn't be sane if her son was not on Melatonin - suggested we should see their Doctor who prescribed the Melatonin for her son. Might be an option if we don't seems to get anywhere in the next few days - The sleep deprived one.

to be continued

2006-09-04T17:53:00.000+12:00

Zombie

2nd of September 2006
The next challenging thing along side of the escapism - is the sleeplessness - which I think probably encourages the houdinism. Both Julie and I although more Julie are getting pretty weary - Elijah is likely to wake at least once a night if not more and well everynight you can't be sure what you will find when open the door - although a smile and a laugh are almost predictable.

The challenge has now been getting him off to sleep as well and so we are in the process of two things - 1) finding someone who will either take the zips of the front of his pyjamas and put them in the back and 2) find a sympathetic Dr who will prescribe us some melatonin to give both Elijah and ourself some peace at night. Our current Dr is not so keen on the melatonin - she doesn't believe in it - well we do from all our reading and are keen to see if this will be of benefit.

03 September 2006
I am happy to report that after some pushing and shoving and a number calls to the hospital, I feel like we have made some progress. I have made contact with a Epilepsy Nurse at the hpspital who will talk with the Specialist tomorrow and is going to recommend we trial some Maletonin - and see what the specialist has to say. She also told us that she will now be our contact person if we want to talk to someone about Elijah's medication particularly in relationship to his seizures but not exclusively. This is a key contact and now we don't have to go via our GP (family doctor) who has not been particularly helpful these last couple of weeks. You know I hatre to say it but the squeaky wheel gets the oil and persistance pays of a bit like the parable of the persistant widow in from the Bible - Luke 18

"Then Jesus told his disciples a parable to show them that they should always pray and not give up. 2He said: "In a certain town there was a judge who neither feared God nor cared about men. 3And there was a widow in that town who kept coming to him with the plea, 'Grant me justice against my adversary.'
4"For some time he refused. But finally he said to himself, 'Even though I don't fear God or care about men, 5yet because this widow keeps bothering me, I will see that she gets justice, so that she won't eventually wear me out with her coming!' "

We give thanks to the Lord that we might now be able to make some progress in this matter.

Until next time

2006-09-01T13:49:00.000+12:00

Houdini lives again...............

I know that across the world there are many parents of angels who have to deal with on a day to day basis the 'houdini' characteristic present in their angel.

I have to say that up until now we have sort of had a handle on Elijah's attempts and the successful attempts to extricate himself from his pyjamas. We only recently had to safety pin the zip on his full body pyjamas. Well this has started the nightly challenge of him trying to pop the safety pin free himself from the pyjamas if only partly remove his nappy and mostly thanks be to God - wee. The other new thing he is up to is to pull his legs up out of the leg holes and to sawp the legs over and then cray out or to jam them both down the same leghole and then to cry out in frustration.

Well last night was just the craziest yet and today well here's and example - managing to bob the safety pin and then trying to get out of the t shirt after having removed his nappy. Tonight we have him in this outfit and a sleeping bag over hte top double pinned with safety pins - here to a good night's sleep (he went ot sleep about 9ish) and the inspiration and guidance of someone to hep make some suits with the zip up the back and a tie to stop him puttling his legs up

Ah the joys of life - until next time.

2006-08-31T14:17:00.000+12:00

Ah the joys of negotiating with doctors is an interesting experience.

About 5 weeks ago Elijah experienced the very dramatic onset of seizures - both abscence seizures and drop seizures. This culminated in unconsciousness and being rushed to the hospital by ambulance.

I guess as parent you are always aware of the high occurence of seizures in Angels, but nothing really emotionally prepares you for the onset of them. Many people I have spoken to have told me that their first experience has been a dramatic one.

The long and short is that Elijah takes both EPILIM (SODIUM VALPROATE) and also (ritrovil) Clonazepam - both anti convulsants. We were told that the the Epilim would take some time to take effect and so we were also prescribed the Clonazepam. ( Elijah was having about 150-200 seizures a day).

He has now been on both these medications for about 5 weeks and although he is 1 and a half we have noticed him become more fussy and irritable, moody and grumpy and even a little aggresive. I found that this can be one of the side effects from the Clonazepam - our family Dr was not so quick to agreed with us - resulting in some tension - I pushed the matter and the upshot is that we are reducing the clonazepam - and then will stop it by this time next week and we will see if this has any affect - I hope so. I also found that bloody noses and skin rashes can occur with both or more closely associate with Epilim and so will be keeping and eye on that.

Apart from all this drama - Elijah is enjoying life as he always does - until next time

2006-08-28T18:09:00.000+12:00

I have to say that I never ceases to amaze me how strong Elijah is growing every day.

I suspected that because he had commando crawled for so long that his upper body would be strong - well as time has gone on it certainly hasn't weakened any and in fact if anthing has got stronger. This poses a challenge when it comes to changing his clothes and when he decides that this is not what 'he' wants to be doing. One of the interesting things that he now does is that in his pyjamas - they are fully zipped up (and now with safety pin on zip) he manages to pull his legs up and somehow swap one leg for the other - and then make noise to say please help me ! His is quite a 'houndini' and on a couple of occasions has manged to spring the safety pin and extracate his bottom half from the pyjamas and well then the nappy goes. thankfully there have not been to many artist effort is the last month of so with the contents of nappies (read diapers)

Elijah is not far off walking - pulling himself up on alot of the funiture. Recently at preschool (that he attends twice a week) he stood up at a table for twenty minutes occupied by playing with some jelly type substances. Everything for Elijah is a a million miles an hour and as soon as your back is turned he has shot off somewhere - will be fun when Elijah is up on hi feet independently.

Until Next time

2006-08-28T16:28:00.000+12:00

Friday 25/08/06
As of this week we now know of a total of four families in Christchurch who have children with Angelman Syndrome. We even heard from the Dad of a little boy who was visting the city from overseas who was recently diagnosed with Angelman Syndrome. He didn't know much about it and so we were able spend some time with him. All going well he is planning to bring his family to come and live in Christchurch and so the Host of Angels in Christchurch is continuing to grow.

Julie and I have given our names to the Hospital and also to Epilepsy NZ and a number of other organisations as contacts for people locally or in the South Island.

We are hoping to be able to meet with the other families in the coming month at least on a social level and then see how we can encourage and support one another on the journey with our angels.

This week was bonus week for me and so I was delighted to be able to suprise the children with some gifts. I bought a battery powered bubble blowing machine for Elijah and a badge/button making set for Francesca.

Elijah was so into the packaging even before I could get it open - he was very curious and then when I go the machine going and boy it does produce bubbles in abundance he giggled with delight and proceeded to chace the bubbles and the machine. Being a little boy he was also interested in finding out about the source of the bubbles. Being as strong as he is = the bubble machine is no match for him - it needed to be " not for Elijah's fingers. Needless to say a fun time was had by all - how can you then be suprised if it took him a bit longer that usual to go off to sleep

Peace be with you and yours
Darren

2006-08-28T16:13:00.000+12:00

Hi My name is Elijah. At the time of the wirting of this first post I am 2 and a half. I live with my parents and sister Francesca, in Christchurch New Zealand.

Just after Easter this Year 2006, I was diagnosed with and rare condition called Angelman Syndrome.

This blog is my journery with my family to places we have not been and meeting people we have not met before. This blog also is a vehicle to share with people about Angelman Syndrome.