Tuesday, December 02, 2008

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.

Sunday, November 09, 2008

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

Thursday, September 18, 2008

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

Tuesday, September 09, 2008

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

Friday, September 05, 2008

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

Wednesday, August 13, 2008

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


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.

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"

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.

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

Friday, August 01, 2008

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

Sunday, June 29, 2008

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


Friday, June 13, 2008

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.

Sunday, May 04, 2008

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

Sunday, April 20, 2008

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

Monday, March 24, 2008

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

Wednesday, February 20, 2008

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

Saturday, February 16, 2008

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.

Thursday, February 07, 2008

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

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.

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.


Monday, February 04, 2008

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

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

Sunday, January 27, 2008

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.

Thursday, January 24, 2008

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

Monday, January 14, 2008

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.