Doctors always cautioned me against getting pregnant, but all I've ever wanted to do was be a mom.
Their fears weren't completely unfounded: I was born with Harlequin ichthyosis (HI), a rare genetic disorder that causes severe skin abnormalities, and pregnancy is extremely dangerous for me. My thick skin doesn't stretch at all and often breaks into painful cracks. I can't regulate my body temperature, which pregnancy hormones make even worse. Plus, pregnancy makes it super easy for me to get an infection, since it suppresses my already-low immune system.
I always knew pregnancy meant huge risks, but those risks were worth it to me. In my heart, I just knew that it would all be okay. So I married to the man of my dreams and, at 20, became the first woman with my condition to give birth.
Life Before Motherhood
I've been defying expectations for a long time. When I was born 23 years ago, my mother's doctors told her that I'd only survive 30 minutes to an hour. Deep cracks in my skin meant I needed to be bandaged head-to-toe to protect against infections, but if the thick skin on my chest couldn't expand enough, I'd suffocate. My mom was told to start thinking about my funeral. Since I was in the NICU at the time, she just kept asking if I was still alive. Every time doctors replied yes, I was, she said, "Then I'm not planning anything. She's going to make it." Mom knew from the beginning that I wasn't giving up.
It may not sound like it to most people, but I was extremely blessed. With HI, my skin sheds and grows a zillion times faster than the average person, so I lose a lot of calories each day. Many HI-affected babies have to have feeding tubes at night to make sure they keep gaining enough weight, but I didn't have to.
To avoid skin infections growing up, my mom had to wrap me in gauze and apply Aquaphor lotion all over my body, sometimes multiple times a day. My skin sheds even inside my ears and nose, which made it hard to hear and sometimes itched a ton, so my mom used tweezers to remove the excess skin.
At the time, there was very little information available about HI, but my mom learned everything she could so that I could learn to take care of myself. Most of the time, it was she and I working through it together, so we've always been pretty good buddies.
I went to public school in the same small Arkansas town where I was born and still live today. My mom and dad were born here too. Everybody knows everybody here. Still, sometimes people would see my red skin and ask if I'd been sunburned, or if I was in a fire. The worst was when people would point at me or whisper to their friends.
My mom was always sure to handle that sort of stuff quickly. When I was five, for example, my mom, my grandmother and I were at Dillard's. An employee started making a scene about my skin — you could hear it across the entire store. She said things like, "What happened?" and "Oh, I thought you had makeup on!" My mom sent me away with my grandmother, and the woman ended up getting fired. Mom taught me how to stand up for myself that day. Now, everyone in town knows who I am: tough.
I joined the cheerleading squad in high school, and that was the first time I felt like I was different. All the other cheerleaders would do their hair and makeup together before football or basketball games, but I don't wear makeup, and I've worn a wig since the first grade. It was hard to feel like I fit in.
I dated a couple boys, some more serious than others, but at 18, I met Curtis. I'd never, ever messaged anyone on Facebook first, but he and I had mutual friends, so when I thought he was cute, I sent him a message on impulse and we hit it off from there. He lived an hour away, so we messaged back and forth and then started talking on the phone.
He never once asked about my skin, so finally, one day I said, "Are you wondering why I'm red? Is that not a concern for you?" And he said no, not at all. I explained everything anyway, and he didn't think it was a big deal. It's still not really a big deal to him.
Curt proposed in February 2011. Our romance was a whirlwind, and I knew right away that he was my forever. Our plan was to get married on September 21.
In April, we were driving home after a doctor's appointment and he said, "I'd marry you right now." I challenged him, "No, you wouldn't." And when he said again, "Yes, I would," I suggested we go right then and there. We called the courthouse and got married that day. Later, my family was heartbroken. I do wish I'd let my mom know; we even had the dress. But I don't regret it. Our ceremony was sweet, intimate and just how I wanted it.
Building a Family
Curtis and I knew we wanted to have kids and started trying to get pregnant right away. We found out on September 21 — the day we'd originally planned to get married — that we were expecting a baby.
When I went to the doctor, I was shocked to hear them say that abortion was my best option. I told them it wasn't going to happen. Every time I spoke to my doctor before it was too far along to terminate the pregnancy, he'd mention it. His reasoning was that in addition to the dangers to my health, there was a 50/50 chance that my baby could have my condition or another form of ichthyosis. What if I was putting myself through all this pain and then the baby died? I said, "Who better to take care of my baby than someone who knows what it's like to go through this?"
Our doctors then suggested rounds of invasive testing, but we refused those as well. I believed whatever God had planned was going to happen. My faith is what kept me right that whole time. Our family could handle it whether my baby had Harlequin ichthyosis or not.
My pregnancy turned out to be flawless. I used more Aquaphor for my skin during pregnancy because I was so fat, but I didn't have to do anything else special at all. My body just knew what was happening and rolled with it.
Delivery, however, ended up being horrible. I was in labor for three days, and then the epidural wouldn't work on one side. My cervix wasn't cooperating either. Finally, when the baby's heart rate dropped, they had to do an emergency C-section and I was put under anesthesia. When a vein got cut, the cauterizer didn't work very well and I was bleeding heavily before they got it to stop.
When Willie finally came out, I didn't see him for a good three or four hours afterward. My family had been able to see him so they were showing me pictures on their phones and eventually I was like, What the crap! Where's my baby? When I finally saw him, he was so perfect, like a Precious Moments baby. It made all the pain and worry worthwhile.
Eight months later, I got pregnant again. It was a surprise, but we were thrilled. I had another easy pregnancy, but I was more nervous than the first time. Part of it was knowing what taking care of a baby was really like. Taking care of two babies was going to be tough as a mom who already had HI — and if this baby also had HI, I knew it would be a lot of extra stress.
This time, I had a scheduled C-section. The epidural worked, they got me in and got Olivia out. She came out screaming like a normal, healthy baby. I even got to do skin-to-skin, her pale skin on my red.
The saddest part of both pregnancies was that I'd wanted to breastfeed so badly. Breastfeeding would require a crazy amount of extra calories — on top of what I already lose in a day — but I wanted to try. Ultimately, I was just too scared and couldn't do it.
Our Happy Foursome
Since becoming a mom, my skincare regimen has ... evolved. When I wake up, my skin is super dry and tight, so I have to take a bath every morning. Before my kids, I would soak for a long time. I'd check Facebook, relax — it was like a vacation. Now that I have kids, though, I get them breakfast first and then take a quick bath. But my two-year-old daughter is playing with my toothbrush in the bathwater and my three-year-old son is throwing towels. It's definitely not a vacation anymore! My life is way more about taking care of them than of myself, which is how I wanted it to be.
They're maniac toddlers right now, but my kids are also great helpers. I can't open my hands completely and they're not very strong because the skin isn't stretched out all the way. When I can't open things, I ask Willie to pitch in.
All along, Curtis has been my rock. He's an amazing father, and now he's my protector. When anybody stares at me at the mall or makes comments, I have to be like, "No, Curtis, it's okay. I can handle it." He's always on my side, he'll help me in any way possible, and he never, ever makes me feel less than beautiful. Anywhere he goes, he wants to make sure I go with him. Even when I'm in sweatpants, he'll say, "Come with me, baby. It's okay, you look beautiful." He'll argue with me when I say I don't.
On his way home from work, Curt often stops on the side of the road to pick my favorite wildflowers. I don't care about store-bought flowers, but I love those. When it gets hot outside or the weather changes drastically, I can't sweat, so my skin hurts and I overheat. Curtis will help me put on lotion or cool me down. He's just super-duper sweet all around, there's no way I can name all the sweet things he does.
My mother has been the biggest influence on the kind of mother I am. When my kids are sick, I'm like, Okay, don't panic — because she taught me to be tough. The biggest lesson I want to hand down from her: You can do anything. Don't care about what other people think, as long as you're happy.
I also want my children to be open to people's differences. Going new places can be a challenge for me. We went to St. Louis not too long ago, and I got so many stares and dumb questions. "Were you in a fire?" is a legitimately stupid question. No, I was not in a fire — I'm wearing a bra and jeans and if I was that sunburned or injured, I wouldn't be in regular clothes. But I'd much rather everyone ask questions instead of just staring and making assumptions.
Most parents don't know to teach their kids about HI. They might teach them about people in wheelchairs, but they don't know about "the red girl" walking around. Even my kids, who have a red mom, still get nervous when they see people with disabilities because they just don't know. So I try to teach my kids about all kinds of people. And I talk to other children and smile and compliment their shirt or something to let them know I'm a nice person. I had one kid at Walmart call me Elmo, but that was probably the cutest thing that ever happened to me, so I was almost proud of it.
My life has been a lot smoother than that of a lot of people who have Harlequin ichthyosis. I want kids with HI to know that it always gets better. Eventually you grow up, and you think, To heck with them. Or you can try to educate people and if they don't want to be educated, you don't need them in your life. No matter what you do, people are going to judge you. You just gotta keep rolling.
Update, March 21, 2017: We are very heartbroken to share that Stephanie Marie Turner died on March 3, 2017. She was 23. "Stephanie's passing has been devastating for our family," her husband, Curtis, wrote on GoFundMe. "Our children Willie, 3 years old, and Olivia, two years old, are truly our little miracles... She leaves behind two blessings from God and has entrusted me to raise these two children of ours to be the kindest, selfless, giving man and woman they can grow into. Stephanie, my heart aches for you, our time was cut short. You have forever changed my life as well as all the people whom you have ever known. You may be gone but never forgotten, and loved always like no other. Thank you from the bottom of my heart for choosing me to spend your life with."
