A Mom’s Lesson to Her Sons

By Lisa Cummins

I have five children -- four are boys; three have epidermolytic ichthyosis (EI). I want to share a little about my boys. My eldest son is 20 years old. He has accomplished two 50-mile hikes for scouts ; he is now in Argentina serving a walking mission for The Church of Jesus Christ of Latter-day Saints. He has had blisters but has never complained to me. Sometimes I did not know how badly until much later.

My 15-year-old son (a sophomore) wants to have something of his own. Despite my trying to protect him, he has joined the rugby team at his local high school. On his first day of tournaments, there were seven players on the field; in spring, the number of players rises to 15. He made some tackles and two field goals. Through practices and games, he has left chunks of skin on the field as pads are not allowed.

My 10-year-old son is just now testing the waters of what he can do and what he wants to do. He is watching his older brothers be independent, brave, persevering and expounding their limits.

As a mother who has ichthyosis, I cringe at what I have seen my boys experience. Call it scrape and blister memory, if you will. I know how it feels. As a young girl, I was involved in dance. Relatively safe.

I have learned to not allow my fears to get in the way. My boys want to become strong men capable of doing anything they set their mind to; most of the time they do not ask my permission. The protective side of me is always nervous about what they are experiencing by choice. "Who in their right mind brushes off being scraped and goes back for more?" Ouch! Maybe I am just a girl/mom and that is a boy thing.

Anyway, it has reinforced my teaching them that they can do hard things and that ichthyosis does not define them.

Being the parent of ichthyosis is a lot harder than being the kid with ichthyosis.

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This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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