I try so hard not to be selfish. Ed's in a better place. Free from ALS. Now that I have this distance from the life we had this past year, tucked away in that little room in the nursing home, I'm realizing how difficult it must've been for Ed. How strong Ed was for never giving up. Never complaining.
At the time, I knew it was tough. I think, though, I was too close to the day to day challenges to really see what Ed endured. Laying there, motionless, day after day. Waking up in the middle of the night, alone, scared. Bored out of his mind. Never hugged, we didn't sleep next to each other, other than range of motion and physical therapy, rarely touched.
When I was there, I would kiss him, run my hands through his hair, hold his hands, rub his legs and his feet. It's those little moments, though... the things we take for granted, that he didn't get. Stuck in that bed, he couldn't even see who came in to the room because he couldn't move his head.
Many times, he asked me to stop "messing with him." I think he felt like a bug under a microscope. I was always looking for some new change, was he ok, what could I do for him? He just wanted to be my husband. Not the dying husband.
I replay everything over and over. What could I have done different? More? In those last days, was he scared? Did he know how much I love him?
I know, I know this is bad to do. What's done is done. I can't change anything. And, I think, in my heart, I do know I was a good wife. A good caregiver.
Life is so different. I can't believe this week is already a month since he died. It feels like it just happened. But it also feels like a year ago. The need I have to touch him again. To kiss him. Hear his voice, his laugh.
Death happens every day. I know I'm not special with these feelings. It doesn't minimize my grief and it shouldn't. But it gives me perspective. As much as I want the world to stop and let me grieve, let me figure things out, life keeps moving forward.
One hour, one day at a time. One foot in front of the other. Sometimes I have to sit, have a little chat with Ed - I wonder how he's doing, where he is. But then I get up and move along.
Some nights, my heart squeezes so hard. It hurts. It takes my breathe away how scared, how lonely I feel without Ed. We only had 5 years together. How do people feel after being married 30, 40 years?
I have this picture of Ed, up in heaven. He and his son, Ryan are walking together. Talking about everything and nothing. It's a bright, sunny day. I imagine him looking in to a window where he can see me, see his son Luther, his grandkids. He's smiling because he knows we'll be ok.
I try so hard to hold on to Ed. To his love. Keeping me afloat. If I get too sad, I let myself cry a little and then remember how lucky I was to have him at all. I remember he doesn't have ALS anymore.
I just miss him so much.
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