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

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