Autumn/Fall reflections on Life with Elijah

I recently spent some time down with Elijah – just hanging out and decided to record some reflections on Elijah Autumn and appreciating life

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The Pain & the Joy

For a long time my experience was that my connection with my son Elijah Humphries was in the pain and at time anguish that I experienced and felt that if I let go of the pain I would loose the connection I had with him. It has been my experience that the opposite is true I felt even more connected with him and there have been times I have felt connected with him physically through other people. It is actually not inspite of but because of Elijah’s death that I live a joy filled and full life – he is not dishonoured by this being my experience. There was a tipping point for me and Tom refers to this in his book as well (Tom Zuba Permission to Mourn)- in Chapter 9 Question Everything and I have come to experience this – Tom writes. You will never
Be the person you were
The person you love
Dearly died
Until you surrender to that truth
You will not heal
Until you release the energy you focus on trying to
Yearning to
Longing to
Go back to the life you had
You will not have the energy to create your new life
You will remain stuck in limbo
Stuck between lives
Some people stay there forever
The death of someone you love
Give you the opportunity to question everything
It is supposed to.
DSCN4224 EDITWhen I re-purposed the energy, journeyed through my emotions and observed them, I began to experience a new life, a new hope, and yes even a new joy this has been my experience and my truth. Sure I at times feel the pain and anguish of the separation, anniversaries and birthdays are times when this experience is more intense, but almost 9 years on – this is not my experience on a daily basis I am so connected and understand my sons life and can see the gifts that I have been given though his death – the idea of that would have probably abhorred me in the early days but I have been wowwed by what I have experienced not in spite of but because my son Elijah Humphries died when he was 3 in ICU from brain damage caused by seizures when in my arms his life support was switched off.


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11 years and Counting – where has the time gone

The 7th of February is Elijah’s 11th birthday. If Francesca’s height is anything to go by fdeElijah you would have been a tall young man by now and I do catch myself wondering how talk and strong he would be today if he was with us in the body. If his height and strength as a three year old was anything to go by he would be quite a match.

In someways it only seems a blink of and eye and Elijah was being born at 6:25 or a summer morning in Burwood, Christchurch, New Zealand. We didn’t live far from the hospital where he was born, literally a 5 minute drive and Elijah was born and hour or so after we arrived there.

It has been a reflective time for me leading up to his birthday thinking about Elijah and his life and giving thanks for it. I was drawn back to the words for the late Fr Miles O’Malley our parish priest at Elijah’s requiem which I now share again.

Frmiles“Spring is just around the corner and sometimes in spring we come across and apple blossom lying on the ground, having been brought down by a hail shower or a gust of wind. We are tempted to say ” what a pity so soon, it would have made a splendid apple”. To speak like this is to imply that the whole worth of that blossom always lay in the future the future for which it had been irrevocably cut off.  But of course that is not true. The point is that THE BLOSSOM HAS LIVED. Even for only a short while and it has accomplished something during it’s brief life. It’s perfume sweetened the air of life, it has brought beauty and brightened the earth, moreover it’s existence signalled the arrival of spring and that is no small achievement. What it would have become is not the point, the point is it is, it was a perfect blossom. what more can anyone ask ? Darren and Julie, your child dies, we’re inclined to say with you what a pity he died before he was able to bear fruit ? In other words we speak of promise rather than of achievement. That’s unfair to Elijah. The most important thing about Elijah is not what he might have achieved, but BUT THE FACT that He WAS !  So instead of grieving for what might have been, it would be better to be thankful for what has been. In fact Elijah did Achieve something he built a store of memories to treasure. To endure what he endured what he endured and then to die so calmly and so bravely is to have achieved a great deal.  It is the equivalent of living to a ripe old age. It is nor length of life that matters but the intensity or the quality of it.”

I have reflected on these words for coming up 8 years now, and upon the words of other teachers on the journey of learning to live with Elijah’s death, journey of brokenness, of making sacred space, of experiencing mourning, and of allowing myself to embrace the pain and anguish, the darkness, to the point of simply being, of choosing to set a purpose to experience life in a a new way, to take up Elijah’s mantle not unlike the Biblical prophet Elisha did. Wow, what an action packed journey as life in a new way has allowed me to accompany others on the journey, in a way I could have never done before. I became grateful for the experience of Elijah’s death and all that went with it.


On the occasion of his 11th birthday I posted the following on this Facebook Page

Tomorrow the 7th of February is my 11th birthday. I give thanks for the time I spend in the body with my family, as a son, as a brother, as a teacher. My life in the body although short as it would seem to most was just the right length of time for me to do what my life was purposed to do. I achieved a lifetime, in my lifetime. This work was just the beginning and continues to work out itself in my family and across the face of the earth.

darrenelijahI also shared this reflection  in a groups as well  ‘In some ways Elijah’s death and AS are at the same time, as one of the best and worst things that could have happened in my life. I don’t feel disconnected from Elijah and I know that his having Angelman Syndrome and his death have enabled me and equipped me for the journey and I am a better person because of both and both have taken me on a journey in life that I could have never imagined was possible. Despite the bittersweetness of his 11th birthday I am ever thankful for the actioned packed three years Elijah was with us in the body and continue to be excited by what his legacy has in store for me and for my family.”


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Tommy’s Anniversary – Connecting

Mike and Tommy Ross

Mike and Tommy Ross

2007 was quite a year for us as a family. I was quite a year for me as a person. Elijah died in August, and I still felt compelled to connect to people in the Global Angelman family. Like the Boons who I met in the follow month or so that I was able to connect to and reach out despite the events of the previous few months. There were some who suggested I not talk about Elijah or the fact that he had died because it would scare parents. Well I didn’t listen to that advice.

I was grateful to a man John who lives in Australia, his daughter whose life was affected by Angelman Syndrome and had died before Elijah, to talk with in the hours after Elijah died, someone who knew something of the journey.

Then in the November came the opportunity for me to be there for another brother. I met Mike on the evening that his son had died in the afternoon. Tommy also like Elijah and the same age had been found to have died in his sleep as a result of seizures. The experience for me of Elijah was really fresh and so I was able to stand and share with Mike in those days and we still do after many messages exchanges, video chats and phone calls.

Today is a day to remember Tommy’s short life – and to stand and pray with Mike and his family as they still learn to live with the death of someone they love. Not the club we as parents or Dad’s sign up for but am grateful that our journey’s have crossed and have been able to share this journey

There is a wonderful video of photos of Tommy can be viewed here

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The news

into lightFrancesca came to see Elijah in the hospital and I slept over that first night and the following day was a day of waiting more tests and things looked promising as Elijah appeared to initiate breathing on his own which gave us hope that we might see the ventilator reduced and he be woken up. The first attempt was not successful, just a matter of time we were told, and yet more monitoring, we knew the support and prayer of many people locally and all over the world. It was an exhausting day just being there and well trying to sleep in hospital chairs is not the most comfortable. All the time the staff were wonderful and caring for Elijah and for us as well. Julie slept over the following night and we kept vigil with our son. There was talk of if he needed to continue to be sedated which was not ideal that he would be transferred by air ambulance to the Starship Children’s ICU in Auckland a 90 minute flight.  I didn’t sleep much and awoke on what was to be the longest day of my life. There was some concern that some of the Elijah’s important stats were not returning to normal as quickly and some concern about his kidney and liver function. There were tests done and more in the afternoon. I visited and spent time and came home to have some space. I remember being at home and some of my brothers came to pray with me, cause I was not doing ok, I know they were making preparation for transporting Elijah to Starship, I got the call to say that they were going to do a MTI scan in preparation so they knew where things were at. Our good friend Andrea was with Julie, and so I went back into the hospital. We accompanied Elijah to the place where the scan was to take place and then back to the ICU, and then began the wait for the results. those of you who have had these sort of hospital stops realise how completely disorientating they can be your whole world goes into a weird suspension. I remember Julie asking me as we were about to go for this scan ” why is this happening to us ?” “the words that immediately came to my lips were “so that that God might be glorified.”  Settled back in the room we nervously awaiting the next step learning the results. it was about 1130 that Julie and I were called into a conference room with the drs from the ICU, as I walked in I just had a sense that it was not going to be news were wanted to hear and so I quickly went back to the room to get Andrea so that she could be there for support for Julie. Nothing prepares you for the words that set off what feels like the explosion of a atomic bomb on the inside. The Dr proceeded to tell us that Elijah has sustained massive brain damage as a result of seizures and this was not survivable – Elijah’s body was shutting down and that he would live perhaps 24-48 hours. His liver would be the first to shut down and this was advanced his urine output was reduced which indicated his kidney function was failing, and if left the toxics would build up in his body and his heart would stop. These were words that were being spoken into a numb sense a dream state, pain like a bomb had exploded inside. The options were to allow this to take his course or were to take Elijah off the ventilator and life support. Difficult as it was this was the decision we made rather than allow Elijah’s body to swell and poison itself we would remove the ventilator and if by some miracle he was to live and breath on his own so it would be. Julie and I were shattered. My son who only a few days earlier was smiling and laughing was not going to recover and laugh and smile again. We called for Francesca to come into the hospital and I made some of the hardest phone calls I ever had to family and close friends to break this heartbreaking news and to come with haste. My Mum and Dad and sister and family began the long journey to be with us and my sister from Australia as we began the vigil of the last hours of Elijah’s live. We kept vigil with Elijah as we prepared ourselves. We called our parish priest who came in those early morning hours to anoint Elijah in preparation for his journey into eternity. There are not words to describe what I experienced that night only those who have been close to this sort of situation can comprehend what it is to hear this sort of news. None of us slept much that night in Elijah’s room as we kept vigil. In the midst of  the trauma of it all we felt the presence of angels and knew that we were being upheld by grace. I write this entry for me as much as anyone to put down on paper how it was for me for my family. There maybe those who read this entry who remember this night as clearly as I do to which I would express my profound thanks for how you supported us in prayer and in good wishes.

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Seven year cycle – brings pain & healing

I was acutely aware when I woke up this morning it was 7 years since we took Elijah to the hospital by ambulance not having any inkling that we would not be bringing him home again except in a wooden box.

when we woke in the early morning – we hadn’t expected things to be as they were, we knew there was some signs of seizure activity the day before but not that we might have woken to find him at the end of a seizure activity that would cause the damage which led to his body shutting down.

This year of all years and perhaps it’s got something to do with that is the seventh year. I felt it in my body and all of the emotions that came with it have continued to flood into my body as the day has gone on.

I felt I had relived the mornings events, the carrying form the bedroom to the lounge in my arms the last helpless glance of his eyes to mine as they closed and he lost consciousness as I laid him on the floor and called for an ambulance.  This was not the first time Elijah had been to hospital by ambulance – and so tDad Elijah Hospital 1shis time was not expected to be any different, so I went to the loo and made a coffee before following the ambulance. As I have written before I then high tailed it to the hospital expecting Elijah to be behind one of the curtains in the ED department not int he triage room – still hang seizures. I’ll not forget the look of his eyes towards me just once and briefly as he closed his eyes for that last time. With drugs onboard they sedated him, with the plan that it would give his body rest and the seizures would stop, and his body would have time to recover. All was not lost, we had hope that in the next day or so he would recover and come round and we would take him home to face another day. He was intubated and taken to the ICU, from there the wait was to begin.


I am thankful for all of those people across the face of the earth who journey with us each day each week and each year. Some of you know this experience first hand and am grateful to the way you reach out to me and to my family.

I just sense the coming days are going to bring with it something pretty full on.

Bring it on I say, bring it on, do your worst cause I am really and waiting to embrace you


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All the Buzz

My name is Darren, Dad to Elijah who got his first tattoo on his sons 7th birthday. It was a portrait, that I would carry with me in the flesh and when I would talk about Elijah I would lift my sleeve and there he would be. That is because Elijah is no longer alive in the body but very much alive in the spirit. Elijah died in 2007 from damaged cause by seizures, seizures that were a characteristic of Angelman Syndrome.

ElijahElijahfinal 3Through Elijah I have met many people from all over the world, many whose lives are impacted by Angelman Syndrome and as I got my ink I began to realise that there were others who had undergone the buzz and had created their own pictures images, names images that would raise awareness, create and awareness and talking point for their loved ones and Angelman Syndrome. Elijah was diagnosed with Angelman Syndrome in 2006 and there are many who echo the call – what is Angelman Syndrome – since then there is a growing awareness and organisations and days to help create awareness.

It seemed most appropriate to me to try and bring together an Ink Collection related to Angelman Syndrome and most appropriately attached to my blog about the Journey of Elijah’s life from diagnosis, till his death and his legacy and impact since. I have been amazed by the interest that this collection of images has, and I am thankful to all those who have allowed me to share their work as part of my Angel Ink Collection.

If anyone reading this would like to share their Angelman related ink please message me –

Enjoy .

Angel Ink Collection


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