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

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