Friday, October 29, 2010

Five Year Anniversary

November 1 marks five years since Colby’s seizures began. As the seizures continue, we lose hope about them ending. We lose hope about a medication working, we lose hope about surgery working. We lose hope about acupuncture, diet, vitamins, and every therapy we’ve tried. But it is only hope for the seizures stopping that is slipping away from us.

Looking with a straightforward openness to the possibility or likelihood that the seizures will always be with us, we now focus our hope on living with them. Hope for life without them now feels unrealistic. Living with constantly disappointed hope is sad and not a useful place to dwell.

I feel full of promise that we can find our way to live with the seizures. I can accept, with at least occasional grace, the constant flexibility and changing plans. I can treat the injuries from another fall with Arnica and ice, kisses and hugs. I can make our home as soft and forgiving and strong as possible. One day, even Colby’s anguished crying may find a resting place in my heart.

We have transmuted our reasons to celebrate, our very sense of what is a victory. Craig came home from a few days of work in the city and while he was gone Colby really seized a lot. Craig’s return, the girls’ and my joy at him being home, a seizure free day, the ravishing fall color out the dining room window, these are the reasons now to open the champagne. Each day is a victory. Each day we are proud of each other, grateful for each other. There is no more special occasion than today.

Recipe of things to always have in the house for instant celebrations. You never know when you will need the cheer, or when your next victory will arrive, be ready!

Cold champagne or favorite wine
Favorite cheeses
Meaty olives
Fine mustard
Crusty bread or elegant crackers
Sardine or tuna packed in olive oil

1 comment:

  1. The most liberating moment of my life was the day we decided not to list our son for a heart transplant and just surrender to whatever was coming. Accepting the reality we were faced with, without grasping at straws, was what brought me the most peace. Fortunately, so far, that has meant that he continued to grow and his heart began to get incrementally stronger, but we didn't know that that could or would happen. We just had to life with what was real at the time. You conveyed this so beautifully in this post. Here's our post about coming to a similar place: