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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
Judith Rose ThompsonJudith 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!
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(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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Go to Michelle S: Daughter of Systemic Scleroderma Patient
 
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