Harlequin Ichthyosis

I wanted to insert myself into the conversation happening a few feet away from me, to explain and to defend — but I held back. I craned my neck a bit, waiting to hear what my children would say to the little girl who had just asked about my daughter’s red, peeling skin. “She has a skin addition,” Connor said, and [...]

The week that my daughter, Brenna, was born was the week before Christmas, and I had been wrapping up my busiest year for my photography business. With a few days to go before the holiday, I had orders sitting in my studio that needed delivering to my clients, and despite all of the unknowns our [...]

We’re so lucky to have one of the best dermatologists we could imagine, and he has always encouraged us to do anything we normally would as a family even if it takes extra planning or if we need to get creative. One of those things is traveling. Even though traveling can be challenging figuring out [...]

As we enter the playground area, your child immediately points to mine, calling loudly “Mom, look at her!” You quickly hush him, calling him to you to quietly reprimand him. You’re at the end of the same grocery store aisle when your child catches a glimpse at the baby in my cart and asks, “Why is [...]

A while ago, I began emailing with a mother who had adopted a daughter with a different kind of ichthyosis many years ago. Her daughter is now grown, and she and I shared emails for a while about all kinds of different topics. One of the things she said has really stuck with me as [...]

We are currently living with a threenager. A threenager, if you were wondering, is a 3-year-old with the drama and attitude of a teenager. Like this, for example. There are temper tantrums, very opinionated opinions and whining. So much whining. Somebody stop the madness. To be honest, I’m finding it difficult at this stage to find the [...]

One Wednesday morning I pulled up to Brenna’s school to pick her up and she emerged, holding her aide’s hand as usual. A little boy from her class also followed her out and was greeted by his own family member picking him up. “Bye Brenna!” he called to her, and I whispered a reminder to [...]

Dear Harlequin Ichthyosis, Yes, I’m talking to you today. You, whose name I couldn’t pronounce for days after hearing it for the first time. You, who appeared unexpectedly on a December afternoon three years ago, causing panic and fear on what should have been a joyous day. I know you now. I wish I’d never [...]

I was in Target in a hurry to find a wedding gift, annoyed that the registry printer wasn’t working and flustered by the kids’ chorus of asking for snacks or to look at this or that. “Is this Breanna?” a woman asked from behind me, pronouncing it “Bree-Anna” (which happens way too much for there [...]