(no subject)

[goodnightmoon]

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 again.

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.

Comments

[nimnod.livejournal.com]

We lost my little cousin to epilepsy 2 years ago. She was 19, and loved all the same things as your daughter; drawing, and fairies, and manga, and anime films, and comic-con, and the Potterverse. She had been asymptomatic for 4 years, off any medication for 2 (with her specialist's consent), and was about to take her driving test. So...her mother allowed her to bath instead of shower. Being a 17 year old girl, and having a teenage brother, she broke the rules and closed and locked the door. The minute her mother noticed (she was checking on her every 2 minutes) she banged on the door, and started trying to open it. When she didn't get an answer, she started breaking down the door, screaming for her husband. They were inside within a minute but it was too late; D had drowned from a fit in the bath. Her mother has been battling to carry on for the sake of her younger two children for the past two years, but I know that she's struggling as you are every day, and also feels like she can't forgive herself for all those times she was too busy to read, or talk, or do anything with her daughter. I don't know what words to say to you to help, because I have been trying to finds words for her for 2 years, and they are so dreadfully inadequate. Do you believe in any sort of afterlife? I... want to. Because then maybe they've met somewhere there and are geeking it up, watching anime to the heart's delights and laughing and squeeing, comparing fanfics and being free.

[mattblakk.livejournal.com]

I have no wisdom, and I know there is no solace other than that provided by the tincture of time. Just want you to know you're heard and loved.

[inlaterdays.livejournal.com]

I have no words. Just lots of sympathy (which I know doesn't really help). And please know that you and Walt are in my prayers every night.

[peppypatti.livejournal.com]

Grief stabs, gnaws, slices and eviscerates-it's far worse than any physical pain-Sending much love and keeping in my memory the special life that you shared with Cassie.

[siberian-skys.livejournal.com]

I keep coming back to your post trying to find the right words, but I don't think they exist. Just know that you and Walt are loved and my thoughts and prayers are with you both. *hugs*

[xanthe.livejournal.com]

I feel for you so much. You gave her a wonderful life and loved her very much, and yes she'd kick your butt and tell you to celebrate her life, and you can do that, too, but you're human, and I don't think there's any way around grief. You have to go through it to come out the other side, and it hurts so much, but you will come out the other side, one day, and that's when the smiles when you think of a memory of her will outweigh the tears. I always feel that the saying 'grief is the price we pay for love' is so apt, and of course Cassie was so much loved that the grief is all the harder. {{{{Hugs}}}}

[alohamelly.livejournal.com]

I know it's not enough, but I'm so sorry.