Now, my mother dances through my memories.

This is a reblog of a post I wrote, three years ago– four days after my mother died. On this, the day after the third anniversary of her death, I’m sharing it again. Each year, when I read it, I feel new things… notice new elements of that post and what I was feeling, in the early days after that enormous loss. Each year, I still miss her. 

This year, on the anniversary of her death, I was in Times Square (click link to read Huff Post piece), preparing to fly home from a 4 day trip to NYC. I’ll be honest (and it’s shocking to me): I didn’t think of my mother at all yesterday. I didn’t remember the anniversary. I didn’t feel that pitt in my stomach, I’ve felt the two years before. I’m in a happy, exciting place this New Year’s Day, with big things that I’ll share later, and some that you all know about. My writing is progressing in an exciting direction, and I’m in a good place in my life. My writing has sustained me. When I wrote this post, I had only a very few readers, and the posts just before this one, and after were so raw and vulnerable… but it was like writing in a vacuum. I wasn’t sure who would read the words, but I knew the words were my path to healing. I am so grateful to all the words that I’ve dug down for, and that have helped me heal and move forward… and I am grateful to all of you who have shared and read them. I am grateful to Word Press first and above all, for sharing my words through Freshly Pressed; I am grateful to Huffington Post for first sharing one post and then making me a featured blogger… my words are what sustain me. It is where I go to heal, to celebrate, to live my life fully. I express it all, and I’m grateful for these 3 years of growth and change. 

It is powerful to look back, and think about 3 short years ago. My mother is still with me, and always will be. I would trade all of the words, to take away her suffering and strike Huntington’s Disease from our family, but short of that, I wouldn’t change a single step.

Three years ago:

There is only one thing for me to write about right now, but I’m not really sure what I think about that. I’m not sure what I feel, yet.  Mainly, because I don’t actually know, what comes after. After years of watching my mother change and then deteriorate. After months of seeing things accelerate faster than we could adjust to or comprehend. After weeks of daily falls, many of which led to hospital visits, bruises, breaks and finally the broken elbow that led to the end.  After nearly three months of Hospice Care in which we knew what was coming, but could never seem to grasp when or how. After, after, after… so many things that I tried to prepare for, but inherently knew I couldn’t be ready for.  Stop, drop and roll. Prepare for a disaster and you hopefully will know what to do, when it comes. Not this time.

My mother died almost four days ago and it is still sinking in. The day she died was by far the most surreal day of my life. If you’ve been following, then you know (from What Doesn’t Kill You… and Peace) that I was sitting with my Mom, holding her hand and trying to ease the very profound fear she seemed to experience, in the thirty minutes leading up to her death. I know that I did, calm her, help her. But in the end, when the room went silent and I felt her finally leave me, I just went a little numb. Ok, maybe a lot numb. And, I’ve stayed like that for four days now… The sounds from that night, those last minutes, play back in my head at odd times. As I lay in my own silent bed at night, I hear that rattled, difficult breaths she took.  As I close my eyes to sleep, I picture how smooth and calm her face was a few hours before she died, and how young she looked again. I see the smile, the very slightest smile, that she made when I told her that I knew she loved me and that I was grateful for her love, and then (right then) watched her take her last breath. But mostly, I just feel outside myself and numb, as all these things, mix with the daily hum, and wash over me… hour by hour.

Friends and family have called. I have spoken to some and not to others. Not playing favorites, but unable to speak, depending on the moment. The gratitude I feel for all the kindness and love that dear friends have shown in these past weeks is overwhelming, an shakes me almost as much as the loss itself. The friends who came to my mother’s room, just to see her and say goodbye. Humbling. The friends who wrapped me in blankets of warm meals, hugs and sweet words.  They were my family, my shelter and I am so very thankful. But now, it is hard to face anyone with ease. It’s hard to think beyond where I am right now. Writing, feeds me and helps me process, but speaking strangles me.

I’ve ventured outside for only two things and both times I felt so exposed. Having come out of the strange cocoon that I was in for four days, I don’t feel like a butterfly. I feel raw and exposed. Part of me wants to say to each person who says: “So, did you have a nice holiday?” or “How are you?”… My mother died, she’s gone!  The part of me that wins stays quiet, smiles and says, “Ok, thanks.”  I know the grief is bubbling to the surface and I know this is normal. This is what happens and it will pass… I believe that, even if I don’t know what comes after that. For now, I am sitting Shiva… alone.  I don’t know how else to do it right now, but I’m listening to myself and doing what I think I need. Solitude. Surrounded by beautiful flowers people have sent, my Christmas tree that still sparkles (despite its dry, sinking branches), and the security of my house for the few hours it is silent. (Thank goodness school started today; thank goodness my husband returns to work; thank goodness for silence.)

The day I left Hospice, I went home, and I wrote the post Peace in my car, in the dark. I didn’t proofread it, or check it; I just hit send and then felt ready to go inside. It was the first “letting go.” I knew that once I left my dark car, and went inside my house, it would all be different.  It was. From the minute I came in, it all just amped up. I had to shower and go directly to a Bat Mitzvah, for a 13 yr old girl who I adore. She is such a sparkle in my life that I would not have missed her big day for almost anything.  My mother had asked us (my sister and I), repeatedly, not to leave her; and the night before she died, I told her:  “at 8:00 A.M. I need to leave you, Mom. to go to M’s Bat Mitzvah. I don’t want to leave you, but I’m at peace with this decision. IF you don’t want me to leave you, you will need to leave me first… before I go at 8.”  Those were my very words. My mom really liked the family whose Bat Mitzvah it was, and I will always believe, that despite her fears, she let go and left me, just in time for me to go and be with them. Call it dreamy, call it whatever; I believe it was a gift.

The Bat Mitzvah was amazing, beautiful, and yet so strange to be in a huge room full of people, when my mind kept going back to the fact that my mother had just died. “It’s been four hours… five… six,” my brain kept registering. Such a shock to hear the Rabbi say her name out loud for Yahrzeit , as having died that morning. The party, after,was a blur: of wonderful people; fun music; silly, delightful 13 yr old girls imitating Justin Bieber and dancing; meaningful conversations with people I care about… bold color, sound and movement. Ten hours, eleven, twelve.

After that I went home for about three hours and knew that if I stopped, I’d pass out. I had slept less than 6 hrs in four full days. I hadn’t even tried that in college, let alone at this age!  My husband had had surgery while I was gone (on him, not him working) and was not really able to provide any support, nor I for him. “In sickness and in health,” bah. I had been surviving mostly on Ritz crackers and Kool Coffee creams (decaf). I hadn’t left the building, except to get something from the car, once.  So, it would have made huge sense, to just get into bed and pass out.

Instead, I had decided to go to a Bikers and Babes New Year’s Eve party that other friends had been pushing for me to attend. I know: what the hell was I thinking?  Well, I was thinking this:  In a 24 hour period, I had “finished” and submitted my novel to a publishing company (the biggest goal I’ve had in many, many years– BRAVO!); I’d sat with my mother as she died; I’d attended and done a reading at a Bat Mitzvah (a very meaningful and important life event for a young girl I love); and now I wanted to just kick the shit out of 2011 and really send it packing. I dressed up like a biker chick, flannel shirt and bra showing (why the hell not, I figured by then) and went out to laugh, dance, wear glow sticks and see 2012 come in. While I did not drink (it might have killed me) and I was slurring my speech from exhaustion; it was so amazing to be with friends and so many crazy ass people, the same day I’d washed my mother’s body and said goodbye to her. How prophetic, I believe, that my Mom did not linger one day more. She died before 2012 could come, and in doing so, she allowed me to walk away from all that this very hard year has symbolized, and be open for a new one. She didn’t drag all of that pain into the New Year, nor did she herself enter one more year with all of that suffering. It was a beautiful thing. I am so grateful to her.

2011 was a wicked bitch of a year. Can’t sugar coat this one folks. It wasn’t all about my Mom, not by a long shot. There were lots of other demons I dealt with and sent packing. It was a lot of struggle with some sublime, life changing experiences as well. Writing my novel and seeing it to completion, brings me so much satisfaction and pride, whatever come of it. Truly. Being in Yellowstone, for two weeks alone, still sustains me and brings tears of sheer joy to my eyes, at moments that just jump up and slap me.  I will always remember those days of finding myself again and knowing that I would, in fact, make it. I am grateful for finding a wise, old friend in Siyo Yona, a wonderful man, who found me on a mountain top, and has stayed beside me since. I will never hear Eddie Vedder sing Society or No Ceiling and not be transported to a place of solitude, clarity and peace.  In my mother’s last few weeks, she too came to love those songs and we listened to them together many times. Music, my life long friend, who never fails me.

I’m going into this New Year with a perspective I’ve never had: total wonder. The world is wide open right now. I am letting go of so many years of holding on. I’m ready to be honest in all things important, wherever that takes me. I’m excited to write, write, and write some more… regardless of whether it gets me anywhere other than where it’s taken me so far. I’m ready to let old pain go and move on to whatever comes next. I feel entitled and free to really reach for what I want, what I need… not just what I think I should do.  There are so many amazing things that have presented themselves that I’m excited to finally explore. I’m so grateful to be free of my mother’s suffering and the suffering I felt in watching her, even as I dread really accepting that she is gone.

I go into a New Year with no regrets in how this all came to an end. The day after my mother died, I told my children this:     “There is one really important lesson I hope you all learn from me. There are ways in which your father and I differ, and this is one of them. I am not always practical, he is. I did not eat well this week; I didn’t sleep for days; I got virtually no exercise for the past many weeks… but I didn’t do this mindlessly. I didn’t do it without thought. Central to who I am is my belief that there are precious moments in life that we can’t miss. You skip meals, you stay awake, you are present and real. The simple ones are the ones when a good friend, who you rarely see (this will come later in life) is in town for one night, and you stay up until 2, knowing that work will be really tough the next day. You do it to reconnect and share a moment with someone who has meaning in your life. That one is easy. Then there are the hard ones: when you sit with someone you love, when they are dying (or truly suffering) and you let go of your own discomfort.  You might miss some meals, or not get enough sleep, but you are there with them in their most vulnerable moment, and you try to show some grace, some compassion and love.  Perhaps you will do it for me, or someone else who you don’t know yet, but who you will love deeply. You are present and real. There is always time to eat, sleep and get exercise… later.”

I hope my children remember, as they go through life, that this is central to who their mother is and what she believes. Who I am, and who I want to be remembered as. 

For now, I’m stuck in this specific moment, and there are no real short cuts, I think.  Stop, Drop and Roll…  No matter how much or how little warning you have,  no matter how many times we think about the things in life that we need to face, and silently practice who you will face them, they can still just blow you away. All those years of fearing my mother’s death, that I would be an orphan: well here it is. It came in the dark stillness of a hospice room. It came to the sound of Celine Dion’s My Heart Will Go On. It came despite the fact that it terrified me, even as I prayed for it. My mother left me, and now I will begin to live without her, and without all she has meant, for so very long. In the end, it didn’t matter if I visualized it hundreds of times; or if I imagined what I would feel, or do, or think. Stop, drop and roll only takes you so far;  for now, I still feel the burn.

Happy New Year folks, and thanks for sharing the journey… so far.

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