Date: 08/16/2021

Thoughts about staring from one of our experienced dads of an affected, now adult daughter. "I've seen posts recently surrounding the inevitable, ubiquitous encounters with the ignorant and curious reacting to our wonderfully different kids. Some of my own encounters over time have left me feeling empowered. Some have enraged me and some have left me wondering WTF was that!

I wrote about our common experience a while back and thought sharing it with everyone again might be of some value especially if it's "staring" you in the face still, or for the first time. So if you'll indulge me, here ya go from 2018...

"We see it every day, so often in fact that as a parent of a young adult, it blurs into obscurity. I’m talking about the reaction people have to Hunter’s appearance. I’ve learned how to dismiss it, but these days, Hunter alerts me in real time to the onslaught of micro aggressive behavior she’s experiencing. She comments on being the target at every encounter in the public space. While standing in line at the checkout, having a meal at a local restaurant that we frequent, and last evening moving through the crowd to find a spot on the lawn to enjoy a free jazz concert in the park, she’s squarely in the crosshairs. Thankfully, Patti and I helped her learn to “accept” being the target of this stuff. I know Hunter struggles with it at times, those demons are real, but we managed somehow to prepare her to deal with it. There really was no choice.

Pics of Orlando ’10 resurfaced this week and Hunter shared her memory of being at Disney’s Hollywood Studios with our friend Merritt Andrews. She vividly remembers the hostile reaction some fellow had to her being in a wheelchair so she wouldn’t have to stand in line, and that Merritt angrily stood up to his rudeness. “I can’t remember exactly what he said, or Merritt’s response, but I do recall the tone of their voices.” I was struck that this was what she remembered from that day 8 years ago. So was she.

In the Dad's breakout in Nashville we spoke of our biggest fear. Mine was that I didn’t give enough attention to my daughter’s mental wellbeing when she was younger. We provided a lot of support for her physical needs, but I could have been more in tune with her mental health needs then as well. Better late than never, Hunter has been involved with counseling in the years since. I’m encouraged that our ichthyosis community seems more enlightened today than I was. I do appreciate Mr. Klafter often reminding me to take credit for doing the right thing; however I recognize that I’ve been a benefactor of dumb luck at times too. Don’t underestimate the importance of supporting our kids with professional help when necessary to cope with being different. Maintaining the barrier isn’t just about skin."

#ichthyosis #mentalhealth