It's been a year. It's been a rough year here. It's been a time of some wonderful gifts and some horrible trying times. Times when I lost all grace, compassion and kindness. Caring for a person who is terminally ill and has Asperger's syndrome is hard. There's just no other way to put it. I am not whining.. I am telling you it's bloody difficult.
When I was in Florida again this spring.. visiting and house sitting.. I ranted and raved and cried at God, I did not want to go back. Well, you know I did.. and I made it through the summer, I think in part, because, I had a small tour guiding job, taking out busloads of tourists once or twice a week. Just the interchange with normal people helped alot.
In October, John started to go down hill quite rapidly. The tumor had returned and that meant visits to the surgeon, the oncologist etc. That also meant that I had to play translator with the medical community who, just, has a really hard time dealing with John's Asperger's.
This time, at the surgeon's we had to force a prognosis out of him. During his errming and arrring I realised it was he, not us that had the issue with death. John's linear, matter of fact, non emotional discussion of less that 6 months to live disturbed all of them.
Living with this is harder than you think.. It's empty. There's no discussion of our shared life together.. there's no acknowledgement. It is empty. and it is the emptiness that eats me sometimes. He doesn't know what he has missed on God's good earth..
There are no little ironic moments, no nuanced conversations... it is empty. In my prayers at the beginning of the year, after I had finally gone a bit crazy from no respite. God said to me 'I wired him, I'll take care of him'.
That profound little statement has given me much peace. My internal scream, and feeling of implosion has lessened.. and I continue to learn.. learn to live moment by moment.. in this place of waiting time.
Bad Romance/Suffrage
1 day ago
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Janny, it's Diva. I'm alongside you, and I'm so happy to find you have the bedrock of Jesus beneath your feet.
ReplyDeleteI remember the struggle to become comfortable with waiting and not knowing. The fact that it's solitary for you makes my heart ache, but even without Asperger's in the picture, there was a certain amount of together-but-not-together since we were each preparing for different things.
Here's a song lyric that's coming to mind. I hope it's a comfort:
God alone, God alone.
In your courts, O my Lord, is my home.
You are my treasure, my portion, delight of my soul.
My life, my salvation, my fortress, my God and my all.
O my soul, claim nothing as your own.
For you, there is God, and God alone.