Me

I thought I'd write about me. But what is there to actually say? My whole identity has been so wrapped up in Alexis these past 7 years that I think I may have disappeared a little, this is of course, understandable when you have an ill child. So much of our hopes and dreams are wrapped up in our children's lives, caring for them, guiding them, sharing their happiness and their pain. Being a parent involves suppressing your own life and focusing on your child's, at least that's what we did and do. When Lex got sick we went into overdrive and stayed there for 7 years. Dealing with the doctors, the pills, the side effects, the hospital appointments, infections, running to emergency, being afraid all the time, or celebrating really hard when things went well. Attempting to provide as 'normal' an environment as possible for all of us to live in took all our time and energy and the routines we developed began to feel normal for us. Our world became very small, what we did depended on how Lex was feeling at the time. We didn't really travel because we never wanted to be too far away from her and we never would make plans too far in advance, just in case. We tried to provide Lex with anything and everything she desired - and probably over-compensated for her illness. But, in the process of trying to care for Lex we suppressed us, I suppressed me. Gradually, we are beginning to understand that we no longer have to live like this, it's hard. Our routines were so entrenched that they felt normal. But we weren't normal, not even close and we're still not normal, whatever that means, how can we be? What has happened is I've not only lost my wonderful daughter I've lost my purpose and my focus and I think my identity. Alexis's needs were so great, but now she doesn't need me anymore and I am free to explore new options and yet this doesn't feel normal or good to me, it feels strange and I feel empty.

The Dream

Am I depressed or just sad, and what is the difference? I feel confused. This death thing is nasty. It muddles you, it makes you feel really bad and it never lets up. When I look at photos of my daughter I feel a 'disconnect' how could someone so totally alive, now be so totally dead? I mean just look at her in the photo, it was only taken 7 short months ago. A radiant girl laughing into the camera, then I equate this photo with what I know, that only a few months later she, ceased to be. What happened? Sometimes I almost feel like I made her up....maybe she never existed at all. It would be easier to believe this, then I wouldn't feel this sense of incredible loss.
This week I found myself thinking 'OK Lex, you've been dead long enough, it's time to come home'. But of course, the reality is that she will never return home and we must learn to understand and accept this. So I return to the question, am I depressed or sad? I believe a little of both. But, I am also working very hard to get on with my life and have begun to think about returning to my old routines, my gym, my painting classes and finding a job. One of the things that is helping me get back on track is 'the dream'. Yes, I dreamt about Lex.
In the dream, I am busy getting dinner ready for us and for Lex's grandparents. My home is bathed in the soft golden light of dusk. Lex appears in my dream with 2 new friends whom I didn't know and she is dressed in new clothes. I speak to her, I tell her that she looks really good, she has gained weight and her hair is back in that cute pixie cut. She nods in agreement. I don't hug her or kiss her, I just gaze at her, she doesn't speak or smile. She looks serious, as if she is checking to see that we are ok, Lex's only worry when she was alive was how her family would be if she didn't survive and that's the impression I get of her, in the dream, it feels as if she is making sure we are all ok. I also feel that she is memorizing the moment, and, that's it. I believe she came to me to show me that she was fine, had made new friends, had new clothes and looked healthy. That she was moving on, so to speak and now, so must we.

Moving Forward and Leaving Lex Behind

10 weeks now, 10 weeks. I'm still eating and breathing and so much more. We all are moving forward but, we are moving further and further away from Lex. In only 10 weeks we have already seen and done things that Lex will never get to experience that she will never ever see. Rick and I went on a cruise and it was beautiful, we sunned, ate and were entertained for a week - she doesn't know. Dani went to Dallas with her girlfriends, but she couldn't share her trip with her sister. We bought a puppy, we now have this lively adorable little creature running around our house giving us licks and love and keeping us very, very busy, but, Alexis will never get to know this dog.
I hope Lex doesn't mind that we named the puppy, 'Turtle' her nickname from the Israeli doctors and her boyfriend. The name makes me feel as if she is sharing this joyful experience with us.
The more we do the greater the distance we put between ourselves and Alexis. I hate this, it worries me I never want to forget her, my memories are all I have, she isn't participating in our lives anymore, she is no longer creating new memories. I feel as if we are leaving her behind, but, at least we are starting to move forward.