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Michelle R: Surviving Daughter of a Diffuse Scleroderma Patient

Seven Years to Live: Part 1

Macaw at Birds N Stuff by Shelley Ensz I was seven or maybe eight when we (my two brothers, sister, and mother) moved to a college campus apartment. We were attending private schools while my mother tried to finish college. It was a small place and those rooms weren't big enough to store all of our belongings, us, and a screaming macaw named "Baby".

My mother would work really hard at exams and her laboratory job. To us, she was forgetting us. We felt we weren't important enough any more. Truth was, she was too busy to take care of us, so my older sister, who was fourteen then, did her motherly duties of cooking, cleaning, teaching, and punishing. My sister was still a teen, but she was more mature as a person. As for my older brother, he worked odd jobs at gas stations, while really trying to be there for my mother and us. Life was different, and it was hard.

I'm not sure when my mother found out she had Diffuse Scleroderma. She was not really open about it with my twin brother and I. Who would be with two seven-year-olds? All I can truly remember are her tears and pain.

It was hard enough to live in that place, let alone hear your mother saying the word "death";. She was told by her doctor that her estimated life span would be around seven years. Wow. Talk about a wake up call. I could not believe some "doctor" was telling my mother that she was not going to live after seven years.

I always look at those first early years of my life as my mother's last.

Later down the road, my mother met another man. She was in love, and I was in confusion. The whole 'mommy daddy get back together thing' was not working for my brother and I. But, she was happy, so I was happy. He proposed and she accepted and so forth. We moved in with him, I think a month or so later. We were still going to private school and this guy lived about an hour away.

I guess one then takes in the good with the bad, because my mother never finished college, but she got married to the man she loved. She got a job, her kids' school was an hour away, and she was getting sicker, but her spirits where high, I think.

This man worked as a hospital director, and with that kind of job comes lots of changes. So to make the next, oh, say three and a half years go by quickly, we just moved around a lot. Cold weather was mostly wherever we went, making my mother as sick as a dog. She also had extremely bad allergies and with Kentucky hay fields in our back yard, she really suffered.

Now lets slow down a little. Our next stop is New Jersey. To be continued; Ending of Part One: Michelle Ryan.

To Contact the Author

Michelle
New email address needed 8-22-03 SLE
Old Email Prefix: KookieDookieDoi
Story posted 9-20-02

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
LINKS
Diffuse Scleroderma

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!

Go to Michelle S: Daughter of Systemic Scleroderma Patient
 
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In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.

 

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