During both of my pregnancies I wondered if my baby would be born with Ichthyosis. After all, I have it and it’s a 50% chance for it to be inherited. My daughter was born and the first thing I asked was “does she have it?” and she didn’t! My husband and I had talked for years about potentially having a child with Ichthyosis en Confetti. My husband never even questioned it! God would give us the babies we were meant to have!
Growing up with it though, you see things a bit differently. I had my fair share of bullies and insecurities. I got left out of things outdoors because people just knew I couldn’t handle the heat. Since growing up, I’ve been able to turn all of that around and see all the blessings that Ichthyosis has given me. Amazing friends and the best community of people you could ask for. A close bond with my dad because he has it too! A reason that people never forget me. A husband who I know without a doubt loves me for me! It’s also given me a son with the same condition.
In early 2018 after 37.5 weeks of pregnancy, it was finally my turn. My whole pregnancy I thought, to myself, “there’s no way I’ll get lucky twice. This baby has Ichthyosis.” At 7:37am, Jackson was born. The nurse instantly said in a very chipper voice, “he has skin like mommy!” He was bright red and his hands and feet were peeling. I never minded the thought of having a child with Ichthyosis, I live with it and have a fairly normal life. Although in the days that followed I did have some guilt and I knew that I needed to not be so shy about our skin. I knew that I needed to be a positive voice for him. I needed to spread awareness rather than just waiting for people to politely or impolitely ask. I needed to close the gap between “normal” people and those with visible differences. I have to teach him to not be a victim but to also have reasonable expectations. He can do anything he sets his mind to, but he may have to make some adjustments. I have to help him to grow up with confidence and compassion.
They always say “be the change you want to see in the world” and that’s exactly what I’m trying to do.

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