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Organ donation is usually the last thing on the minds of those who have lost someone suddenly.  I know it was for me.  But I am here today to share my experience and the impact it’s had on my life.  There’s absolutely nothing that anyone can do to prepare for a loss such as this.  But there were certain people who helped guide me through those last moments in my mother’s physical presence. They listened, heard what was unspoken, and showed compassion.

The week leading up to “the phone call” was Carnival down in New Orleans (also known as Mardi Gras). I had been living there for only 4 months and looking forward to my mother’s visit the following week.  My boyfriend Brain was visiting for his very first Mardi Gras.  We were having the time of our lives.  On Lundi Gras night I got a voicemail from my mother telling me she had a bad headache “which never happens. I think I’d feel a lot better if I heard your voice”, she said.  It was very late when I got the message and I was babysitting my Fairy Godchild at the time, so I would call her in the morning. I never got to call her back.

After 9 hours of travel we arrived at UMASS Worcester on Mardi Gras day.  It all happened in slow motion after this.  We entered into a room full of somber family members and there was my mother, laying there peacefully in a hospital bed hooked up to all sorts of tubing.  I still didn’t know then, or perhaps I was in denial, that “there’s nothing else they can do”.   I stood there looking at my mother in disbelief.  Though the room was packed, it was just her and I.    I told her she looked beautiful (which she surprisingly did after having a massive stroke).  I then took out the two stuffed Grateful Dead “Dancing Bears”, which we bought on our first road trip to Colorado when I was 16 years old.  They were our good luck traveling bears.   I laid them on her bed along with a framed photograph of her and my father from the day of their wedding.

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  My sweetheart, Brian, took out his ipod and proceeded to play her “Brokedown Palace”. I closed my eyes imagining her dancing around with that bright and contagious smile of hers.

“River going to take me, sing sweet and sleepy,

Sing me sweet and sleepy all the way back home.

It’s a far gone lullaby, sung many years ago.

Mama, mama many worlds I’ve come since I first left

home.”

A transformation was in progress and I was right there dancing with her.

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Most of our experiences we cannot control.  Scary thought, right?  I never want to hear those words, “there’s nothing else they can do” again, but if I have to endure that pain over, I can only trust and believe that “this is for a reason” and there is support in place to help me cope with such an immense loss.

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I accepted the reality of the situation and naturally wanted to move forward and not dwell.  I wanted to move through this heartbreak; through this deep sadness.  The only way out is through, right?  I kept reminding myself to breath and to do everything that felt natural for my body even if that meant laying on the cold hospital floor.  In that hospital room, a piece of me died while simultaneously being reborn; truly cathartic experience that would change my life forever.

The death of my mother was unfathomably painful.  My mother, my best friend, my soul mate, my everything, was moving onto bigger and better things; going on a journey I couldn’t follow her on (so I thought at the time).

Though I was still very much in a state of shock I conjured up enough strength to make decisions in a rational manner.  What would my mother want?  Like I said, we were one in the same, so the decisions were not “hard” to make, but they were nonetheless heartbreaking.  What made this emotionally

draining process a little easier was that little “❤” on her license.

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Of course she was an organ donor!  That was so Mom; a selfless human being – a giver.

The staff at the Worcester Hospital was truly kind; changing my view of hospitals forever.  My family’s experiences at hospitals have never been positive; misdiagnoses, insensitivity, and a lack of empathy.  My mother was more Eastern in her beliefs, as am I, but Worcester went above and beyond to make us all comfortable. I felt blessed to be guided by some gentle souls through this process.  I was warned that the organ donation process was long but we could break at any time.  There were times I needed to lay down on the floor, stretch out my back, and breathe deep.  No one questioned that.  They were actually very attentive.  The hospital staff allowed me to hop in bed with my mother where I snuggled, held her hand, and napped by her side.  Knowing I was going to be there for a little while, they made us all feel very comfortable.  One nurse asked if she could put on Pandora’s “Grateful Dead” channel (one of my mother’s favorites).

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When I awoke, there were more emotionally draining decisions to be made.  But I continued to feel the support.

My first angel organ donor rep, Denise ❤, was warm and nurturing.  I remember her kind eyes and calming smile.   When she arrived at the hospital there was no sense of urgency.  Filling out the forms, she said, could be very arduous task but kept reiterating that it’s perfectly normal to take a break.

Half way through, though I told her I was all right to go on, she read that it was time for a small break.  She took that opportunity to use the bathroom.  As soon as she left the room, I dropped to the ground and started stretching my body.  I was a struck with grief and I appreciated that small break.  When she came back in, Denise made sure I was all right (I think I may have worried her a bit) and we proceeded to fill out the papers.  My whole experience at the hospital was such a blur, especially at 1AM, but I remember Denise caring and I felt connected to this stranger.  She asked me who I was; and truly wanted to know.  I made a friend that night.

I thought the morning would never come.  I was advised by family and staff to get some sleep.  Tomorrow was going to be a long day.  When I awoke all I wanted to do was to lay down next to my mother.  My dear, sweet, peaceful mother who looked just as peaceful as she did the day before.  The nurses were kind enough to make space for me.  I climbed into her hospital bed, held her hand and fell asleep again.

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Not long after I was gently awoken and politely asked if I could get up; they needed to administer some tests.  As if on cue, my 2nd New England Donor Bank ANGEL, Dan ❤, entered the hospital room with grace.  He introduced himself and told us that he was here to support and guide us through the next phase.  Whatever this meant, it was going to be ok.  I trusted him.  He asked me if I’d like a few clay moldings of my mother’s hand.  “YES! We can do that?!” After we finished four of them, he asked if I would like a lock of her hair.  “YES! GOD YES!  I would have never thought of this.”  She liked to straighten her hair but I found a natural curl that I now keep in a bottle on my shrine.  Lastly, he asked me if I’d like her EKG papers.  He proceeded to give me four triangular glass bottles filled with her heartbeat.  What beautiful gifts.  I really didn’t know what to say.  Thank you, Dan.  I’ve created the most beautiful shrines and am looking forward to creating a “shadow/memory box” full of Mother Love.

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It was a long ride home from the hospital.  After barely making it up the stairs I pulled myself into bed and grieved my immense loss.   No more than 5 minutes later my house started to fill up with many loving friends.  All of them knew my mother.  I proudly shared her with my community of friends woven together by the local Cambridge/Somerville music scene.  They all welcomed her with open arms.

Dan called me a couple hours into this impromptu love fest.  I excused myself, and with Brian by my side, I took one of the most significant phone calls of my life.  He told me about this fairly new procedure that allowed those whose faces had been severely disfigured by traumatic events to have quality of life by receiving a facial transplant.  He couldn’t tell me who it was for, but he said my mother was a match and her beautiful face and skin could be the greatest gift ever given.  Without hesitation I said, “Yes, of course”.  It’s a decision I would want my family to make for me, and what my mother would want me to do.  As he explained what was to happen next, I couldn’t help but stare at this oversized Anatomy book that happened to be facing me on the floor.

My only question was, “is this person going to look like her?”  He explained that everyone had their own unique facial structure and it would mold to their face.  So, it was done the next morning… on Valentines Day.

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I would be here for another hour if I started talking about Carmen.  Carmen.  Beautiful, inspiring, resilient, brave, Carmen.  I think we both feel equally as lucky to be in each other’s lives.  Our bond is strong and I feel will only strengthen over time.  Their connection, my mother’s and Carmen’s is, well, ineffable.  Love fueled and on another plane.

Eight months have gone by and there’s not a day that goes by when I don’t think of her.  Every day is mother’s day.  Grief sure does come in waves.

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My mother and I have experienced so much loss in our lives.  The hand that we were dealt was not an easy one.  But the key players in your life are those who are around, supporting you however they possibly can, when all feels lost.

I think of all of the angels who guided me in that hospital – ICU Nurses and Organ Donor Representatives alike.  You, as health care professionals and organ donor representatives are in a unique position.  You are present for a life altering experience for those closest in the hospital to those passing on.  It’s a major transition that families are entering into without much guidance.  Without knowing how to feel and just feeling it all.

You have the ability to guide families into making selfless and life-changing decisions, which will, in turn, give life to someone else.  What an incredible opportunity.  The key is to hold that space for people by allowing them to grieve and showing them empathy.  It’s amazing how a little eye contact can bring so much comfort.

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Show your light.  Be a guiding light.  You have the ability to lead these grieving souls out of complete darkness, if only for a little while, by being genuine – by being human… and, sure, a little hand molding kit, a lock of hair, and a few bottles full of heartbeats can’t hurt.

Thank you.

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