Winning. And Losing…

A few weeks back I wrote that when there’s a longer stretch between posts that my friends and readers offer their concern for my well-being. This time with reason sadly.

When I started writing this blog it was a way to share updates on my journey with ECD with friends. Everyone could read the same update, get that out of the way and then I could then spend my time speaking of more enjoyable matters with them.

I’ve been told that this blog has been a resource for other patients dealing with this illness; wondering how I’ve made out with the various experimental treatments I’ve tried over the last three years as they consider their own treatment options.

Along the way this blog turned into a story, sharing the medical details of my battle with ECD, telling anecdotes of my family life (funny events have a way of following me around, I’m glad to have added a smile to your faces once in awhile!), sharing quite openly about how I’ve been dealing with the illness and a rather trying set of personal circumstances.

As with any story, at some point it needs to draw to a close. Going forward I imagine that the posts will be fewer and further between. The truth is that my health has been declining quite rapidly over the last weeks, and although I like to think of myself as the eternal optimist I need to face some harsh realities. There just aren’t that many funny stories to share these days (but they’re not completely absent either!)

Some tough discussions have taken place over the last week, including one with my daughter that I wish with all my heart could have had a very different outlook. My best friend flew into town on short notice to help me take care of some stupendously difficult tasks that I would otherwise have had to tackle on my own.

So far this sounds like the losing part of the blog title.

When my daughter came home from school this past week it was blatantly obvious too her that some big changes had occurred in her absence. My heart was breaking as I told her how things appears to be playing out for me, and I told her that I hoped and prayed that she didn’t view it as me giving up.

What she said to me was a gift that I’ll take with me to the end. Through her tears she looked me in the eye and told me that as far as she was concerned, I’d won. That I’d been provided with a poor prognosis, and I was still here beyond our expectations.

Perhaps I’ll rally again as I have on previous occasions, but sadly things feel very different than when I’ve gone through other medical crises.

I’m surrounded by people who love me, care for me, and accept me for who I am (quirkiness and all!) and who are making this last part of the story as happy and peaceful as I might possibly hope it to be under the circumstances. But I am very, very tired in every sense of the word.

I’m not certain when I’ll stop writing here, and it’s of course entirely up to you whether you check back or not. Regardless, dear readers - I thank you for sharing this journey with me over the last three and half years.