A golden heart stops beating...

The nurse who took care of my mom that day asked casually if Dan was going to be up that night and when Dana explained that he was needed at work and would be there the next evening the nurse advised her to have him come as soon as possible and to assemble the rest of our family. I answered Dana’s call around 6 and she was forced to tell me that they believed my mom would not make it through the night, we had anywhere from a few minutes to a few hours, she had already called Dan. I made the remaining phone calls, gathering Kelly and Christina, our father and while I called my Aunt Cathy to ask her to get in touch with Bud and Debbie, James took a quick shower and my brother-in-law came to sit with the kids.

We piled into my minivan and met up with Dana and Helen at Penn Hospice. I walked down the hall to my mom’s room with Chris by my side, I was so focused on getting to her that it took me a moment to realize that Chris was dropping behind. I turned to her and saw the fear across her face, “I don’t think I can go in there.” she stated. I told her I would go in first and tell her what I saw and she could decide then if it was something she wanted to face. She nodded her head slowly looking passed me at the closed door to my mom’s room.

I pushed the door open and my eyes were drawn to Dana, she had pulled a chair up to my mom’s bed. She held my mom’s hand in her own and laid her head across my mom’s lap. I heard the shallow gasping sound and saw the slight twitch of my mom’s head before my brain realized those two things were related. The gasping sound of my mom trying to draw in air while her head moved with the effort; in that split second I started to take inventory of my entire life, all the things I had meant to say, projects I should have completed, actions I should have taken would never be put on hold again and I would always remember to appreciate what I had when it was there and not when it was gone. Her nail beds were blue as were her tongue and lips. Her eyes were closed as they have been for several weeks and out of habit I reached out to lift her lids and saw those blue eyes surrounded by red. It wasn’t like seeing someone with bloodshot eyes, it was as if her eyes had actually filled and instead of glistening tears I expected to see streaks of blood once the fluid overwhelmed her. I let go of her lids quickly and waited for the sickening fear in my heart to subside before I stepped into the hall to get Chris. I explained to her what I saw and hugged her tight before we stepped to my mom’s bedside.

I leaned over my mom and told her I loved her, one of the few times I have said that to her out loud. I told her she was my very best friend and that I would always miss her but that she needed to take care of herself now because we would all be fine. I never told her it was okay for her to go because I know that is a decision she will make for herself. I watched as Dan leaned his head against hers and stroked her hair, Kelly pulled a chair next to Dana while Chris and I sat across from them both, my father dropped to his knees at the foot of her bed and bowed his head. Helen tried to step back and away stating that we were her daughters and she didn’t want to be in our way; we pulled her close, into our circle where she belongs. Time seemed to stand still and the room was horribly silent; the sounds of my mom’s hitching breaths were so loud and so wrong. I held her hand in my own and stared at the blue pallor of her fingertips. The full realization of the impending loss weighed differently on each of us but it was something we shared all the same. I am not sure what everyone else thought of in those long silent moments but my mind wandered over the nightmares of my mom’s illness; placement of the feeding tube, the trach tube, the lumbar punctures, and the awful waiting and total confusion that comes with the diagnosis of a rare illness. When I was at my lowest, I forced myself to think of the life I shared with my mom and I knew in that moment that if I had it to do over again I would live the nightmare again so that this would be the woman I called mom.

My mom’s condition remained the same, around midnight we ordered some pizzas and started switching off to eat when it arrived, never leaving her alone. Dana did not move from the chair by her bed and later, when I finally woke her she had sheet creases across her head where it had simply dropped to the bed in exhaustion. She never ate and never let go of my mom’s hand. Dan continued to smooth her hair back and tell her it was just a bad day after he took a split second to devour a slice of pizza. The silence dragged on as we absorbed the shock of arriving at that moment but as time continued to go by the TV was turned on and the laughter began. It is strange how natural it felt to laugh in those moments. In the movies everyone is serious and waits until the deathbed occupant bestows on them, some beautiful words of wisdom that change their lives, but in life it is just not that way. For us, it was tears and laughter and more tears and more laughter that lasted through the weekend. We spent the weekend with my mom just as we did every other weekend of our lives and when she passed quietly Monday morning, alone, with Dan singing softly beside her, I knew we had all been exactly where she had meant for us to be,