John passed away the 18th of February at 7:35 pm. After my last blog I received the most wonderful Grace from God.. My anger was gone. It allowed me to be compassionate and loving, to be present to his care and needs. On the 31st of January, he went to bed, and couldn't get out again. He went rapidly down hill after that. I was able to keep him at home as I had promised and he died peacfully with our Norfolk Terriers and the cat by his side, as well as myself. I sang to him the only song I could remember at the time.. Jesus Loves Me... and I told him that God was waiting for him and loved him.
Now, I am alone, and I feel as though I have done my very best to the end for a fellow human, my husband and a friend. Asperger's still permeates mylife to some extent as I have started going through John's clutter and collections which include every phone bill for 24 years meticulously saved, every bank statement, every utility bill as well as anything he was interested in on the computer, printed out and filed. It's alot of paper.. but I'll get through it a bit at a time.
I didn't realise how deeply exhausted I was and still am.. both physically and emotionally, I haven't slept longer than 2.5 hours for so long that now I don't. But it's getting better, I have had a couple of days of good sleep. And I know things are going to be alright. The worry, the stress the anger is gone. I am aware that there is a big hole in my being from this loss.. and I am not going to let it be filled up with the same. I am grateful to God and our Lord Jesus for giving me the Grace to see this through.. even though I complained all the way. I am a bigger and better person for it and authentic in my relationship with God. I don't have anything to bitch about anymore.. and I am not going to go looking for something. I am going to bring and feel the Joy in my life.. and do so with an immense amount of Gratitude and Love.
Below is the tribute I wrote for John, to be read at his memorial service 16th of March in Southport, his home town.
John’s Memorial Service
Our John was a genius.. a master of many facts and figures. Skilled at concepts that most of us couldn’t pronounce the name of. He was in a word: Brilliant. But, the most common inter personal things could leave him frustrated and angry. His understanding of human nature, behaviour and nuance left him frustrated and many times blank. John had Asperger’s. It permeated Our life together long before we both knew what that was. It permeated his relationship with everyone who knew him. We all thought of him as an eccentric, awkward academic who was first out of the taxi and last up to the bar and at times, very hard work. But we loved him just the same.
One place he could inter-act freely and not be mis understood was with his animals, and he loved them dearly. When I first met him he had his Cat Charm, a sweet little black cat who came from Steve Trawley who is here today. John took his responsibilities to Charm very seriously when he got her as a kitten he took two weeks holiday time to stay home with her and her brother, Strange, to make sure they were settled in. John used to live in Didcot during the week and come home on weekends to London. When I moved in, Charm and I spent the week together and every
Friday night at 6:00 she would place her self at the front door waiting for John to come home. Charm lived to be 21 years old.. a testament to John’s good care of her.
Later he began a life long love of Norfolk Terriers and each one we had he loved very much. But none compared to the one we called Buffy. Buffy chose John, crawling out of the litter pen and into his ruck sack the day he went to choose a puppy. From the time she came home with him on the overnight train to Inverness from London, she sat on his knee when he drove. She never moved and they went everywhere like that. When Buffy died, it was the only time I saw John cry.
When we learned the prognosis of John’s illness.. he calculated that the odds of having both Asperger’s syndrome and Cholangio carcinoma were 3 million to one. That was John’s approach to life, one of facts, figures and knowledge. I told him, you should buy a lottery ticket then.
John loved his work, his computer, and knowledge, he soaked it up contributing regularly to Wikipedia as an author and editor right up until 3 weeks before he died. Even after he was too weak to talk, he could still use the computer.
I will miss him, even today, I thought, I should tell John this.. I knew I might not get an immediate response from much of my observations, but eventually hours, or days later out of the blue there would come Printed out pages of what I had mentioned and every thing you ever wanted to know about the subject. Whether it was person, place or thing.
We loved him, not because he was smart and clever, but, because of his child like honesty and innocence in his approach to life. And I will miss that.
Now, I am alone, and I feel as though I have done my very best to the end for a fellow human, my husband and a friend. Asperger's still permeates mylife to some extent as I have started going through John's clutter and collections which include every phone bill for 24 years meticulously saved, every bank statement, every utility bill as well as anything he was interested in on the computer, printed out and filed. It's alot of paper.. but I'll get through it a bit at a time.
I didn't realise how deeply exhausted I was and still am.. both physically and emotionally, I haven't slept longer than 2.5 hours for so long that now I don't. But it's getting better, I have had a couple of days of good sleep. And I know things are going to be alright. The worry, the stress the anger is gone. I am aware that there is a big hole in my being from this loss.. and I am not going to let it be filled up with the same. I am grateful to God and our Lord Jesus for giving me the Grace to see this through.. even though I complained all the way. I am a bigger and better person for it and authentic in my relationship with God. I don't have anything to bitch about anymore.. and I am not going to go looking for something. I am going to bring and feel the Joy in my life.. and do so with an immense amount of Gratitude and Love.
Below is the tribute I wrote for John, to be read at his memorial service 16th of March in Southport, his home town.
John’s Memorial Service
Our John was a genius.. a master of many facts and figures. Skilled at concepts that most of us couldn’t pronounce the name of. He was in a word: Brilliant. But, the most common inter personal things could leave him frustrated and angry. His understanding of human nature, behaviour and nuance left him frustrated and many times blank. John had Asperger’s. It permeated Our life together long before we both knew what that was. It permeated his relationship with everyone who knew him. We all thought of him as an eccentric, awkward academic who was first out of the taxi and last up to the bar and at times, very hard work. But we loved him just the same.
One place he could inter-act freely and not be mis understood was with his animals, and he loved them dearly. When I first met him he had his Cat Charm, a sweet little black cat who came from Steve Trawley who is here today. John took his responsibilities to Charm very seriously when he got her as a kitten he took two weeks holiday time to stay home with her and her brother, Strange, to make sure they were settled in. John used to live in Didcot during the week and come home on weekends to London. When I moved in, Charm and I spent the week together and every
Friday night at 6:00 she would place her self at the front door waiting for John to come home. Charm lived to be 21 years old.. a testament to John’s good care of her.
Later he began a life long love of Norfolk Terriers and each one we had he loved very much. But none compared to the one we called Buffy. Buffy chose John, crawling out of the litter pen and into his ruck sack the day he went to choose a puppy. From the time she came home with him on the overnight train to Inverness from London, she sat on his knee when he drove. She never moved and they went everywhere like that. When Buffy died, it was the only time I saw John cry.
When we learned the prognosis of John’s illness.. he calculated that the odds of having both Asperger’s syndrome and Cholangio carcinoma were 3 million to one. That was John’s approach to life, one of facts, figures and knowledge. I told him, you should buy a lottery ticket then.
John loved his work, his computer, and knowledge, he soaked it up contributing regularly to Wikipedia as an author and editor right up until 3 weeks before he died. Even after he was too weak to talk, he could still use the computer.
I will miss him, even today, I thought, I should tell John this.. I knew I might not get an immediate response from much of my observations, but eventually hours, or days later out of the blue there would come Printed out pages of what I had mentioned and every thing you ever wanted to know about the subject. Whether it was person, place or thing.
We loved him, not because he was smart and clever, but, because of his child like honesty and innocence in his approach to life. And I will miss that.
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