I have more experience with losing loved ones than you, but that doesn’t seem to help me much with this. I cry a lot, especially in the shower, the water pouring down on my head triggers my tears and I sob. It seems necessary and cleansing to let the dread and fear leak out in that way.

I cannot accept that my bright and beautiful and warm and funny, brown-eyed boy is in such pain, has had to let go of so many of his life plans, and will not be able to be all that he could have been. I rage at the unfairness and think “WHY not ME?”

But, I am grateful that I can share this very hard time with you, I know that you love him as much as I do. I also know he is very well loved by Jen and his friends and I am so grateful for the love that he receives from them.

I hope that together we can keep him comfortable, make him laugh or a least smile, and let him know how much we love him and try to keep him with us as long as we can.

Love, Mom

What I’ve learned from her is that positivity is amazingly powerful. It’s not about making miracles – her time is limited and she’s knows it – its about making every day count.

Stay positive. Much easier said than done, but when the fight does end, you’ll know you made the best out of the moments you had.

A while ago, having experienced (experiencing? does the experience end?) grief and loss of my own sort, I read Joan Didion’s A Year of Magical Thinking. I found it helpful to look at someone else’s loss and feel slightly less crazy as a result.

A concept that has also been helpful to me is that of “ambiguous loss.” (I’ve got a book by that title in my nightstand but haven’t tackled it yet.) You are experiencing loss, even though your brother is still with you. It’s ambiguous (unlike what your friend Laurie went through). That ambiguity makes it very differently difficult.

And, sometimes, it’s okay to let your grief overwhelm you. You don’t have to be “good” to anyone all of the time. Sometimes, you need to step back and take care of you, because when you come back, you’re stronger and more “good.” (But get help if you get stuck in that overwhelm. Depression sucks.)

Hang in there.