"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

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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