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Cheryl: Surviving Daughter of A Systemic Scleroderma Patient

"Stand up, be strong and do what you know in your heart is right."

Flowers for Cheryl by Shelley Ensz This is what I shared at my mother's memorial service.

Some of the last words my mother said to me were to tell me how special I was to her and how much she loved me. She and my father adopted me when shewas twenty-nine years old. Her doctor had told her that carrying another child would be too much of a risk to her health so she chose to adopt because, as she said, she wanted a daughter.

In the last weeks of her life I drove from Austin to Houston, Texas every few days and spent the night at the hospital once a week with her. There was someone from our church or family with her twenty-four hours a day.

She was in so much pain during this time that all I could do was brace myself for a night of staring helplessly at her, as she could not find a moment's peace. My mother, who always had the answer for any problem, was the source of my security. She taught me what relentless meant by fighting for every moment of life.

Could this even be happening? As I stood staring, I finally admitted to myself that she was not going to win this battle. At least not win it the way I needed her to. I needed her to look at me and reassure me that she would always be there for me and that this was just another hospital stay and that just like the triple bypass, the hip replacement, the several surgeries ensuing the hip replacement, the hand amputation and all the other procedures she had endured, and that she would be coming home.

I wanted to be able to hear her laugh and talk to our family cat whom she adored. I wanted her to ask me to sit on her bed in the morning while she drank the coffee I brought her. I wanted to feel her put her arms around me. I swore that I would do anything, anything at all if she did not die. I would quit my job and move home, be a better daughter, go to church more, live the way she had always wanted me to. I would do anything if she would just stay alive.

I felt so scared. What would life be like without her? How could I ever be happy? Why had I ever fought with her? What were the fights even about? I could not remember. Why hadn't I said all the things I wanted to say now, before? Does she know how much I love her? Did she realize that when I was twelve and said I hated her that I did not ever mean it? Why had I pulled away from her so much?

Around three o'clock in the morning when all her pain medication finally gave her a reprieve, she looked over and asked me to sit next to her so that she could see me. She told me, "The day that the lawyer brought you to us, there were so many people at our home waiting for you…" I had heard this story a million times, but this time I opened myself up and listened. I knew that it would be the last time I might ever hear her tell it. I had often wondered why she told me over and over, but I finally stopped and allowed myself to understand that she wanted me to remember how important a day it had been for her.

She went on to tell me how it had all been part of God's plan. I was meant to be her daughter and she was meant to be my mother. She expressed gratitude to my biological mother for giving me to her.

I finally broke open and cried out, "You are my mother. The only one that I have ever wanted and I do not know what I will do without you."

She began to cry and said, "You still have your father and your brother."

"It will not be the same," I said.

"I know," she smiled, "I know." She asked me to promise her that I would be happy. She said that one day there would be a man in my life who would love me as I deserved, but that no one would ever love me as much as she did.

She was not afraid to die. She knew that God would take care of her. I thought to myself how amazing my mother was because I was mad at God. So mad that at the time I did not want to even think about Him. What was He doing?! This is something that I still struggle with.

My father, brother, her sister and I were able to see her before her last amputation. I was crying and she simply smiled and said, "No tears."

We have come together today out of love and respect for the most important woman in my family's life, my mother. The pride I feel for being her daughter extends beyond my ability to measure and at the same time, the loss I feel is sometimes unbearable. The comfort that sustains our family comes from knowing that she is no longer suffering as she did for so long and also from the memories we have been able to share and the prayers that have been said on her and our behalf. Although my fear of this very day has been with me for far too long, I have to fall back on what she has told me so many times before: "Stand up, be strong," she would say, "and do what you know in your heart is right."

What my heart tells me is right today, this day that I hoped would always wait just a little longer, is very simple. Ensure that she is remembered for the amazing force that she was her whole life, not what her illness tried to make her. And as her daughter it is my honor to do so.

I watched my mother greet people who came to visit or stay with her in the hospital with her engaging smile even when her pain was immense. She would tell the women how pretty their hair looked, how she liked something they were wearing or just how good it was to see them. She would tell the nurses how she appreciated their care. I watched her reach up and touch one young nurse on the face and told her how beautiful she was. She kept on doing what she had always done, made whoever was around her feel happy.

My mother always told me how valuable good friends were and that if you were lucky enough you would have a few that you could always depend on. Please take a moment to look around to see how many of you are here today. I ask you, how lucky was my mother? Feel blessed that you have been touched by one of the kindest souls this world has ever known. You have touched her life as well. If she were here, she would hug each one of you and tell you thank you. Thank you for how much you love her, how much you have always cared for her, and thank you for the care that you have shown her family. I ask that when you leave here today you take with you memories of the good times. Times of friendship and games of 42, weddings and birthday parties. When you see some of my mother's favorite things like elephants, giraffes, lighthouses and roses think of her and feel joy. Joy that you knew her and joy that we all know that she is in a better place free from pain. Remember she was an artist, that she loved to travel, that Barbara Streisand was her favorite singer. Remember that she was always a Dallas Cowboys fan, even when they could not win a game. Remember her wonderful laugh. Please remind her grandchildren how in love she was with them. She always said that you could never tell a child you loved them too often.

My mother passed away with the same grace with which she lived her whole life. We can continue on with the lessons she taught us. What came so natural to her and natural to all of you as you have shown. We can love each other, help each other and always be patient with each other. Brighten someone's day and never take for granted a day that we are healthy. May I say one more time how proud my brother and I are to call her our mother.

What a bittersweet day.

To Contact the Author

New email address needed 08-06-09 SLE
Old Email Prefix: cheryl_robinson
Story edited 10-31-02
Story posted 11-10-02

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
Scleroderma Survivor Stories

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

ISN's Voices of Scleroderma Volume 2

The story on this page is featured in our book, Voices of Scleroderma Volume 2! ISN.

Go to Chloe: Morphea

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)