I'm angry that Dylan is no longer part of my everyday life. That she is not here to see Mikey's development and when he's reached each of his firsts. That I have to "work it into my plans" for the day or week of when to go and see her since she's a 3 hour ride away in Yonkers. That she's not around for the planned or unplanned dinners and parties with family and friends. I'm angry about what my life is now without her. I curse that day, May 13, 2012, and her asthma.
Well, recently I just got tired of feeling like that. It was June, my 42nd birthday was quickly approaching and it was warm outside. I needed to change my mood, change my perspective. I began to focus on what I was grateful for: the care she received at Elizabeth Seton; the support she had from me and the family and friends that continually pray for her and send her well wishes; the fact that she shows a response whenever she hears Mikey's voice; the fact that she is more alert and is still a fighter. And during this exercise I realized that the positivity I felt wouldn't be as rewarding as it was at the beginning of this journey. I realized that I would have to find something else that would help me in sustaining this feeling. I realized that I'd have to find my joy elsewhere, without Dylan. That realization scared me. It scared me enough to bring about a desperately needed crying session - one of the handful I'd had in the past two years. I had to ask myself if finding joy elsewhere meant that I was moving on? And did moving on mean that I'd left her behind? That I'd excluded her? That she was somehow less relevant to what was going on in my life?
I answer those questions now each day and am still unsettled by them. But I've realized that I never will be completely settled. This whole experience is a work in progress and I, unfortunately, will probably never have a routine again as far as my emotional state goes. There will probably be ups and downs for the rest of my life. What I'll need to do is learn to manage them. For my sake and the sake of all those that I love and care about, I needed to learn to ride my roller coaster. Because if I didn't, I'd continue to shut down, to not live. And I can't be an effective wife and mother if I do that. I can't be a good daughter and friend if I do that. I can't be me. Hopefully, I'll be patient enough with myself to remember to forgive myself when I do forget and lose focus. We'll see.
So here I am, all 42 years of me trying again to figure out how to live this life, how best to navigate through this experience. I do so with focus now and with the thought that it will be a consistent challenge and that I'll just have to learn as I go along. There just won't be any planning with this! Ah, the joys of childhood! :-)