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It’s been 92 days since my mom died. I often wonder where she is now. Where does her soul reside? I could feel it quietly slip away that night at her bedside. Mom was more than a good woman, she was the very best. Gone are the constructs of my childhood, the black and white of what the afterlife looks like. The conceptual partof heaven no longer works for me. I was taught a utopia, free of pain and where all experience only pure love and joy.

It sounds like something I’ve been aching for all along. I’ve only caught short-lived glimpses, here and there, like scattered leaves blowing through my life. The promise of Jesus and of eternal life in heaven? of resting with His angels is the only hope I have. I intuitively know I will not find that love here in this world.

Most of my adult life I’ve had a fear which grips me, that I’m damned. So it is only a fleeting hope for me, to join my mom.

“5 Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to“

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I haven’t been the same since she left. There is a hole in my heart I can’t seem to repair. She was always my touchstone, my North Star. The one I turned to for advice on all matters. She was far more intelligent than I, she was a born diplomat, she was articulate and refined.

She had Grace.

When she came home 3 years ago and told me that she had ALS, I was silently horrified. For I knew exactly what fate would lie ahead for my mom.

No cure. No treatment. Ascending paralysis beginning in each limb, until one day her esophagus would no longer work and her diaphragm would no longer move….. She would slowly starve and suffocate.

Even when you know the storm is coming you can just never fully prepare for its wrath.

Watching her lose more and more, over and over again and being helpless to stop it, became gut wrenching. At one point she asked a family member to shoot her, in a moment of despair. For she had just lost the ability to wipe her bottom on the toilet.

I never felt that she was never a burden to me, I would have sawed off both my right leg and arm to help her.

She left two months ago, and the time of death was called at 8:00 pm, yet it feels like the clock has stood still for me. That night is frozen, crystallized in my mind.

I watched her those last 2 days as her feet became mottled. Her breathing became more shallow and stopped frequently. That last day her fingertips and toes began to turn a bluish color and the nurse confirmed death was only hours away.

I had just finished reading Psalm 91 aloud to her. She took comfort in that particular Book. She could still hear us. This we had proved with a smile she gave when we asked her for a photo. When I read the last line of Psalm 91, she breathed her last.

I fell into her as if I was a child again. “Mommy! Oh Mommy! Don’t go! I love you!!” I pleaded, as I clung onto her and hugged her tightly.

We all sat with her while waiting until the funeral home came to get her. But the nurses came in to say they needed to “get her ready”. So I asked what that involved. They explained they would be washing her body.

So I volunteered my sister, I, and my aunt to do it. What in the hell was I getting us into. Apparently now I’m a whiz at cleaning a dead body? WTF?

By this point, my mom did not look like herself anymore. Her skin tone had already changed to a light ashen yellow grayish color except for her extremities which continued to get more blue-purple by the minute. Her mouth was agape and would not close no matter how many times I tried to close it. My sister kept ordering me to shut it and I told her, “Itjust pops back open you fool!” Her hair began to look more like straw than hair, no matter how I brushed it. The way you might a doll’s hair.

People always say that the deceased just look like they are sleeping, but I am here to tell you she did not. She looked lifeless and she did not look like my mom any more. This was only 1 hour post-mortem. The nurse handed us some towels and explained that when we rolled her, we need to place a towel over her mouth in case some fluids leak out. And also that she may have lost control of bowel and bladder. Alrighty then!

As I stood there gloved up ready to wash my beloved mom, I felt scared shit. I thought , “I’m not as brave as I thought.” Mom was the brave one who had this disease kick the shit out of her for three years non-stop and never gave up. Bearing that in mind, I did my best to just suck it up and remember that my mom deserved the best care, til the very end. With that I jumped right in.

I knew then, in that moment as I was washing her naked body that all that she was, had transcended this world. That indeed, she was gone. That I was cleaning the vehicle which had carried her soul for so many years. I was strangely aware that somehow she knew that, from wherever she was. She was proud of us for the respect and homage we paying her through what we were doing. We redressed her in a lavender colored brand new night gown, her favorite color. We put her favorite soft wool socks on her feet. We all gave her one last kiss goodbye.

When the funeral home came with the stretcher and black body bag with that long metal zipper. I decided to leave. I instinctively knew that I would never be able to get that image out of my head. So I took my little sister and my aunt by the hand and told them we had done all we could and that it was time to go. That was the longest corridor I have ever walked, away from that room. I told both of them we are going to get in the car and no one is going to turn around to look back.

No one did.

Still, I have to say I don’t have things all tidied up in some neat little bow. What is after this? Oh I believe there is something. I believe in God. Where it this place you go? what it’s like, I would’nt pretend to know.

I know that I miss her terribly, I feel lost without her here. I talk to her but want so desperately for her to talk back. All I can do is hope that one day that will happen. That one day I can see her again.

Going to my elementary school, there were about thirty kids in my class. Hell, my graduating high school class there were 562 of us. Recess was always fun. Our playground was pretty nice because I lived in an affluent suburb. It had what most nice school playgrounds in suburbia do. Plenty of swing sets, slides, see-saws. Box-ball and hop-scotch were even painted right on the hot top itself.

*
I became friends with Jimmy in second grade. We were in Mrs. Drapeau’s class. There was a few unforgettable things that happened that year. Like the time that Henry Altenwen puked and peed his pants at the same time in the front of the class. The time that Eric Frobert puked all over his reading book. And the time that Mrs. Drapeau yelled at me in front of everyone for helping a classmate pronounce a word when they were struggling, during oral reading. Asked me if I thought I should teach the class. I remember feeling my face felt hot and I felt ashamed. I was only trying to help him, my heart was kind. It’s amazing the influence that teachers can have in shaping children.

*
Jimmy and I stood next to the teacher aid at recess you see. I didn’t get much attention at home, my life there was a living hell that no one would ever find out about. Jimmy? well he was physically sick. I didn’t really know with what. His shoulders were always raised up by his chin because he struggled to breathe. So we both had different reasons for hanging out with the teacher aid at recess while all the other kids frolicked about on a beautiful sunny day.

*
Me being the little chatter box, and not really grasping at age 7 that Jimmy was so sick I treated him like anyone else. I asked him all sorts of questions since he could not run or walk around much. Why this, why that. He laughed at my questions. I told a lot of stories and a lot of jokes. I asked if he was ever going to get braces. I asked him all kinds of crazy shit. (I used to ask my Catholic grandmother if I was reincarnated and maybe I were a rock in another life)

*
Jimmy and I went to St. Mary’s Church together as well. So I am sure that I yapped about CCD too. I liked our time together. Me, Jimmy, and the teacher aide.

*
Jimmy had been out from school for a few weeks and one morning I came into school and the Mrs. Drapeau said that Jimmy wouldn’t be coming back. That he was in heaven.

*
Her words hung in the air like a garrote, choking the love in my little heart.
*****
Jimmy as I would later learn had Cystic Fibrosis. I spent a good deal of time in my teens doing the Stair Climb, an annual event during the early 1990’s at the Prudential Center in Boston to raise money for my favorite childhood friend that I lost to death.

*
Every year my dad would drive me to Boston and I would get people to sponsor me for each floor that I could walk up. I always made it to the top of it’s 52 floors. Course my legs felt like rubber when I got done. I have asthma, and sometimes it was a struggle and I would get winded. It would occur to me as I walked, how Jimmy struggled day after day. How winded he must have been. That I get relief with an inhaler…. that he suffocated. I cried as I climbed.

*
Since 1965, the term “65 Roses” has been used by children of all ages to describe their disease because it’s easier to pronounce.

*
*****
After Jimmy’s funeral, his mother sent me a card. It read, “Thank you Lexi for being there for my son. You were his only friend.” Her words gripped me and I will never forget them. To this day I never realized that all the other kids, were frolicking around, never talked to him, never stopped to get to know him. Strange, how because of the hell I lived and the horror of what happened in my house, God brought Jimmy and I together.
*****
2 weeks ago, I received a text from my mom which made me ecstatic! It read, “there is a new treatment for Cystic Fibrosis!” So I ran over and googled it. Sure enough, there is. It is a brand new FDA approved drug called “Kalydeco.”

*
It reminded me of Jimmy and I smiled, then cried. Some 35 years later, the love for my friend still lives in my heart.