my sustenance

Often your post is what I intentionally read last before bed. That way I go to sleep thinking about important things rather than about work or the very minor stuff I worry about during the day. Thank you for that.


I just had a moment to catch up on your blog. I hear the hurt that the positive effects of the current therapy are so slow, so tenuous that one begins to disbelieve that things can change. It has some analog in the seasonal despair of mud season. A Maineish slough of despond: there ariseth in [the] soul many fears, and doubts, and discouraging apprehensions, which all of them get together, and settle in this place; and this is the reason of the badness of this ground. Like mud season, I hope to see it clear soon, but I can't promise any time table on which you will be relieved of this heart-wearying struggle. Keep on. None of us can anticipate the best changes, in ourselves or in others, that time will bring. You gave, I think, the best defense of hope some weeks ago. We must embrace it for without it we are lost.  


I'm so sorry, Christy. With the label on your post "despair" I can feel the weight from your home to mine. If I had posted within these last few difficult months, there would be a label of "resignation." I am in awe of the sadness of epilepsy, of how it drains the life from its sufferers and drains the color from the caretakers' lives. My heart is with you today.


I'm listening. Sometimes I cry when I read. I have nothing else to offer.


We haven't corresponded much this year, but I've thought of you and your family many, many times over the past 12 months. Calvin's picture remains on my computer desktop and I continue pray for his health, peace and well-being (as well as yours and Michael's) every day I see his picture.



  1. what keeps me coming back is your raw honesty. So many other write rosy renditions of their lives or tell only part of their stories. You put it out there, the good, the bad and yes, the ugly. We NEED to see the ugly or we will just keep pretending it doesn't exist and can't touch us. We all also NEED to know that we are not alone when it comes to the pain in this life.

  2. Please continue, you are my sustenance!

  3. I'm still reading, and sometimes I still cry. But today I made a small donation to CURE, and that feels like something. I would never have heard of CURE without your blog.

    RR Julia

    1. julia, i have missed you. glad to know you are still out there reading and thank you so much for your donation. xo