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Larella: Mother of Son with Morphea

That green hair turned out to be a miracle for us.

Flowers for Larella by Shelley Ensz Cody was diagnosed with morphea in October of 2001. He was eight at the time and had a white, leathery, hard patch developing under his right eye.

A year prior to Cody's diagnosis, I asked his pediatrician about a bruise under his eye that did not seem to want to go away. During another visit I asked about the bruise that turned in to a white patch, that then began to spread and harden. Both times I was told to put sunscreen on the patch.

Finally, during a checkup for my two-year-old, I asked the pediatrician to take one more look at Cody's patch. He did, and sent us to a specialist the very next day. I guess Cody needed more than sunscreen. The specialist was a dermatologist. She took five minutes to give us a diagnosis and then sent us on our way. She advised us not to read anything about the disease because it would only scare us. We decided not to wait a year this time to see another doctor.

Cody has since been seen by a pediatric rheumatologist who confirmed the diagnosis. The doctor has decided no treatment is warranted at this time. The jury is still out on this doctor, but he seems to know what he is talking about. We might give him a couple more months.

Since the diagnosis, my husband and I have been in overdrive trying to gain as much information as possible on the illness. Because it affects Cody's face we feel we need to be extremely proactive. Cody can't cover up the scarring and he can't hide from the stares or questions. Along with educating ourselves, we have decided as a family to help empower our son. As adults, my husband and I feel an extreme lack of control over this situation. We can only imagine being a child who has to live with this illness. We decided that Cody needed to learn how to make decisions about his body. (We all know he is going to have to make some tough ones very soon.)

One of the first decisions Cody made, like most eight-year-old boys in the year 2002, was to dye his hair green. You should have seen the stylist's reaction when Cody jumped into the chair and said, "I want my hair green and my parents said it was my choice!" She asked my husband, who was with Cody at the time, if he was a weekend dad. She did not want an angry mother coming in to the shop on Monday screaming about someone dyeing her son's hair green.

Shortly after the hair job, I found my son in the bathtub full of green water, crying. (I knew it was serious when he did not scream the minute I opened the door and saw him naked.) When I asked why he was crying he told me that his hair was not green anymore. I brought him a mirror and assured him that it still was. He smiled when he looked in the mirror, a smile of such genuine relief that I began to cry. He told me that since he had green hair no one at school had asked about his eye. No one had teased him about it, and he hadn't had to tell the kids he was contagious just so they would leave him alone. (Guess who was crying even harder after this conversation? I do not think I stopped for days.)

This was the first real conversation my son and I had had about his illness since his diagnosis. That green hair turned out to be a miracle for us. He told me things after we left the bathroom that he hadn't ever before. We talked about the illness and how it might affect him. We talked about school, his future, and our love for him as a family, and mine for him as a mother. I assured him that no matter what happens, we will always be there for him and he will always have the support of his family. I also assured him that he is strong enough to take what ever comes. Together, we are an unbeatable force.

It has been four months since Cody dyed his hair. It has faded and he has now decided he wants blue hair. I do not know if I am ready to battle the school system again but I have already made the appointment. I am looking forward to a tub full of blue water and another "most meaningful" life conversations with my son.

To Contact the Author

Larella
New email address needed.
Old Email Prefix: larellajames
New email address needed 07-18-06 SLE
Story submitted 5-14-02
Story posted 5-25-02
New email address 7-28-02

Story Artist: Shelley Ensz
LINKS
Juvenile Scleroderma
Morphea Scleroderma
Types of Scleroderma

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 Laura C: Mother of Morphea 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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