it's incomprehensible to me that I haven't seen my daughter in three weeks. I haven't hugged her, haven't heard her voice. How is the world still turning? It's like being zapped into some alternate universe where only me and a handful of others realize that the apocalypse has happened. That the world has been pulled apart and nothing will ever be the same, but around us life continues to happen, and I am fighting against the stream to get to some place where my heart doesn't hurt every second of every day. I dream about her, she's the first thing I think about when I wake up and the last thing I think about before I go to sleep. I will never see her again in this lifetime. I will never hold her again, I'll never make up for the times I was too busy or too tired to read to her, to watch one of those animes with her that she adored and I couldn't stand. I won't be taking her to Comic Con this weekend to meet Wil Wheaton. Never Never Never. It doesn't feel real. I think if it did, I would lay down and die.
It doesn't matter that I knew
for nearly 17 years that I could lose her any day. It doesn't matter
that over those years, I saw and experienced the grief of many parents
who went before me, losing their own children to this disorder. I cried
for them, with them. But in the face of losing my own child nothing
prepared me for how utterly empty I would feel, how I would lose not
just my daughter but any sense of purpose, of meaning. How everything
would feel flat and gray knowing she would never experience any of it
I know. I know that EB would have just continued to rob
her of her health and she would suffer more, that she was never going to
get well. I know that her death was painless, without fear, and that
that is a great mercy. I know that she would kick my ass and tell me to
celebrate her life instead of grieving her death. I know all of this. I
know I still have a wonderful son who needs me and deserves my attention
and time. But when I say the hurt is unbearable I meant it literally.
Sometimes it hurts so much I just have to go to bed and sleep until I
can stand it again, until I can make it a few hours without feeling like
I can't go on like this.
People have often commended me and
Cassie for how composed and accepting we were in the face of her
illness. If I was composed, or believed I was accepting, it's because I
didn't truly know how it would feel to hold a notebook full of her
unfinished drawings and know they would never be finished. Because never
can't be real until you are living it, one minute at a time.