It’s so exciting to see the progress of Brenna. Brenna was not expected to live, but over her three years, has achieved huge milestones. She may be small but she’s a force.
“When my three-year-old daughter, Brenna, began preschool, I was fully prepared to go into her classroom and explain to her new friends about why her skin looks so red and flaky, and why she is always covered with thick lotion.
But something funny happened on her first day: not one of her classmates said anything about her skin.
And, as far as I know, no questions have been asked in the last 3 months either.
Brenna was born in December 2011 with Harlequin ichthyosis, which gives her the appearance of a severe sunburn all over her body. Starting school has been a part of her life that always gave my husband and I a little anxiety as we thought about how the other children might treat her and accept her.
But we have been surprised in the best possible way as we witness Brenna’s classmates calling out morning greetings and after-school farewells to her. Her teacher updates us each week on Brenna’s progress, and is quick to note how much she is warming up to sitting with her friends during rug time and how they all want to play with her on the playground. Brenna comes home sharing stories about who she played with in the “housekeeping” area, which is her favorite part of school.
This new school experience over the last couple of months has given our family so much hope about Brenna’s future at school, because we feel like she is gaining not only new friends but also allies. The kind of kids who will be likely to stick up for her as they grow up, because they see her for who she is – their friend and classmate – and not for her skin.
Sure, there have been lots of stares and questions from the older kids in school, but all of that curiosity over Brenna’s appearance has been easily remedied when they discover it’s just how she was born. In fact, Brenna even is assembling her own posse of older girls who love to crowd around her after therapy sessions and talk to her and give her high-fives.
I had to suppress a smile one day as I heard one of the little second-grade boys ask “what happened to her?” and his classmates, already knowing about her skin, retorted back “NOTH-ING!”
I know things won’t always be this easy or innocent. But hearing such protectiveness from other children regarding my daughter lets me know that she will do just fine in school as she continues to grow and to learn and to make friends, who will be her loyal allies over the years.”
May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.