Monday, February 24, 2014

I'd Like to Make Myself Believe

It seems that it took roughly six weeks for the soul-numbing shock to wear off, and the tears to start. I'm not much of a crier. I never have been. I barely cried the first month. And now I can't stop. This upsets Walter terribly and he avoids me a lot. It freaks him out that he can be talking about something seemingly innocent and innocuous, and I can't respond without my voice breaking.

Over and over again my mind plays through the few days that lead to her death. I was so sick myself, and felt so sorry for myself that I had to take care of her when I could barely stand up myself. I wonder if I missed something, if I'd sucked it up and done what I needed to, if I'd taken her back to the doctor, gotten more fluids in her, if if if. The thoughts chase themselves around my head morning and night, but they don't bring her back. Nothing is going to bring her back. I go to her room and look at her shelves full of dolls and trinkets and treasures and try to truly comprehend that she'll never play with them again. That the dolls she got for Christmas were barely touched. That I'll never see her sweet face again, or hear her voice. I know that having her here forever wouldn't have been long enough, but 16 years just wasn't enough.

Nearly every minute of my life for the last 17 years was spent caring for her. Now every minute is spent thinking of her and missing her.

In other news, Walt and I have been blessed to find a place to move to that will be more affordable for us now. The sad reality is that with Cassie's death, we also lost her social security benefits, which constituted about a third of our income. In some regards this will be balanced by the out of pocket expenses for her that I won't be paying now, but until I find a secure job, lower rent is a priority.

Finding this place is very good. The timing, needing to move in on April 1st, is hard. I can't say right now if I would ever feel ready, but I can say that the thought of moving is traumatic. Packing up Cassie's room, not being able to go in there every day and sit on her bed, see her bathrobe still hanging on the closet door and her purse on the doorknob. Like she will be home any minute. Of course many of her things will be displayed throughout anywhere I call home, always, but the idea of living in a space where I have no memories of her is hard. We loved this house. It's been good to us. We have a lot of wonderful memories here of sleepovers and parties and holidays. I know those memories will always be a part of me, but right now I want to burrow in and stay in place, but life has other plans for me and the Boy Wonder.

Friday, February 21, 2014

Ain't No Sunshine When She's Gone

About a week and a half before Cassie died, her friend Dakota asked me, out of the blue, "Mr. Logan, what are you going to do one day when Cassie dies? How are you going to handle it?"

I answered her honestly and replied "It's such a sad, scary, huge thought that my brain can't process it. When I try to imagine life without her one day my mind just goes blank."

And that's where I am. I am blank, and empty, and simultaneously brimming over with a leaden anxiety that sits on my chest like a blanket of bees, waiting to sting if I dare to take a deep breath. Which will get me first, the lack of oxygen or the bees? I don't know. I know that I never could have imagined how much I miss her. Nothing can prepare you for how it feels to lose something, or someone, until they are really gone.

Some days I get up and function. I do what needs to be done. Other days I try to sleep as much as possible because I can't get through a day without her there. The ache is too great. I look in her room, at her bed, and still I can't accept that I will never kiss her forehead again, hear her laugh, I'll never again wake up to hear calling out to me that she needs me. From my bedroom, across the hall from hers, each day when I sat up, I could see her feet. Each day I sit up and look across the hall to that empty bed, and my arms feel so empty. I know everyone tells me that I will manage to cope with this, that it'll become bearable one day. But those days are somewhere on the other side of that blank slate, the endless number of days I have to wake up and feel her absence before I've barely opened my eyes.

Sunday, February 2, 2014

Dreamers only love you when they're Dreaming

Trying to sleep is outright torture. After only sleeping about 3 hours last night, I took a nap this afternoon and dreamed that Cassie was dead, and Marcia and I were supposed to be meeting somewhere to finally get married. I was unclogging a toilet that had overflowed and Cassie's iPad was on the floor getting wet, and as I was trying to save it, Marcia called and asked why I hadn't met her at the airport. She was in Brazil, and I was supposed to be there but hadn't bought a ticket or gotten my passport. I got off the phone and took off my shirt to mop up the mess on the floor and my chest and stomach were covered in huge blisters, so large they were hanging down over the waistband of my pants.

Then I wake up, and reality isn't any better.

Saturday, February 1, 2014

a million minutes of Never

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.