Dancing in the Rain

"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

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

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

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

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

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

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