If there has been anyone who has given our family hope for Brenna living a “normal” life into adulthood just purely by her actions, it is a young woman named Stephanie.
When Stephanie was born almost 20 years ago, her mom was just 19 years old and was told that her daughter would not survive. She was told about Harlequin Ichthyosis, that it was fatal, and a counselor came to her hospital room to prepare her for Stephanie’s death.
Day after day, she was told “she’s still alive, but don’t expect her to be much longer,” and eventually, her mother said, “why not expect her to live longer? She wasn’t expected to live 5 minutes, and it’s been days now!”
After a one-month hospital stay, Stephanie was released and sent home with her mother. On Tuesday, Stephanie will turn 20 years old!
When I saw a photo of Stephanie as a baby, I could hardly believe the strong resemblance to Brenna…
Over the years, Stephanie has grown into a very strong, independent woman… with a stubborn streak that she credits her mother with 🙂 She was a cheerleader in high school, she goes boating, she hunts, and I am constantly in amazement of her “whatever anyone else can do, I can do too” attitude.
Last year, she got married to a wonderful man named Curt, and after a few months, she and her husband made an announcement that made my heart soar – she was pregnant. The first woman with Harlequin Ichthyosis to ever be pregnant! As of today, she is now 30 weeks along!
With Brenna being a girl, I have followed Stephanie’s journey very closely – first in her relationship, getting married and now having a baby. All the things I hope for Brenna someday, if that is what she wants too. I asked Stephanie to write a guest post, answering so many of the questions that I have wondered this past year…Here is her story:
As lame as it sounds, Curt and I met on the internet. I went out on the limb and messaged him first since right off, I thought he was cute as could be. He told me I was beautiful, and I told him he could text me.
He waited about two hours until he texted me, which drove me nuts because I’m steadily thinking “Well he obviously didn’t think I was too dang cute or he’d have already texted me!” or “Maybe he didn’t notice my skin until after he said I was beautiful then changed his mind?” (not sure how he could NOT notice, but I was panicking!) . Eventually he did text me, and I found out he was putting his nephew to sleep. Haha!
I was nervous at first that my skin would be an issue for him, but I had to get it in my mind ahead of time to “go for it, what’s the worst that could happen? Could the outcome of the good outweigh the bad?” … I’ve had boyfriends before, went out on dates, etc. But I had known them for a while or we had mutual friends, not just some random person like Curt was at the time.
I wanted to address my skin situation before we got too far into the conversation, so after we exchanged a few texts I went ahead and decided to jump into it. I asked him if he was wondering why my skin is red. He said “No, not really. You’re beautiful no matter what, but you can tell me if you want to.”
I now know God meant for us to be together, but one of the first reasons why I thought that was because a few days after Curt and I knew each other and we talked daily, he opened up and told me that when he was really young his daddy got burned severely. One day a kid at school told Curt his dad looked like Freddy Krueger because of his skin. Needless to say the kid never said it again! But Curt knew how words could hurt, and how just because a person’s skin looks different doesn’t mean they’re any different from anyone else or needs to be treated different. Words can’t explain how bad I hate that his daddy (now the BEST father-in-law ever) got burned, but I thank God Curt learned that so young and was so accepting! His family was too!
After we were married and settled into our new apartment with our little puppy, Curt had a great job and financially we were doing alright, and of course we were completely in love. The only thing it seemed like we were missing is a baby! A year before meeting Curt, I had a serious boyfriend and he constantly talked about how I probably couldn’t get pregnant because of my skin and because no one else had babies that had Harlequin (like there are so many people out there!). He made me feel awful and pretty nervous about my future.
We started talking about having a baby and the risks. We were very aware that it more than likely would be a very bumpy journey, not easy by any means. Frankly, it could kill me. I was completely ready for whatever might come my way!
Doctors couldn’t tell us anything because it’s never been done before. None of them thought it was a good idea because my skin has such a difficult time stretching and keeping enough nutrients for myself, much less another growing human. Both sides of our family weren’t for the idea either… As much as they all wanted grandbabies from us, they knew just as well as everyone else that it was very dangerous. They kept suggesting adoption. In reality, the only people whose opinion mattered in the final decision was mine and Curt’s.
We talked endlessly about it, and Curt made it clear that he wanted to be a daddy, but losing me wasn’t an option for him. Plus, what if something happened and he lost me AND the baby? I understood where he was coming from, but I just knew everything would be okay. We decided to pray about it and leave it in God’s hands. We prayed for whatever God wanted to happen, to happen. The first month, I got pregnant – definitely God’s plan!!
I go to a high risk OB because everyone thought I’d have to have special care. I’ve eaten more (I ate a lot before…mainly because I’m a pig!), I apply lotion after my morning bath and most nights I apply Baby Oil Gel and I go to the doctor just as regular as every other pregnant woman! I did lose 2 pounds, and I was instantly worried, but as soon as we went back to the ultrasound room, we discovered my little angel weighed two pounds! He was even a week ahead of what he’s supposed to be, and they moved my due date from May 24th to May 10th! I’m losing and he’s gaining? I’ll take it! 😉
Going into this pregnancy I had so many worries. My first trimester was nothing, but worrying about Mason. What if he was too little? Even though it was a very slim chance, what if he has H.I.? (side note: Stephanie’s baby would only have Harlequin if Curt also carried the gene, which would be exceedingly rare. The baby will, however, be a carrier regardless because he will inherit one affected gene from Stephanie). God forbid, what if I miscarried? Every little thing would worry me! Then I realized after every ultrasound, he’s getting healthier and healthier and growing normally. God’s got him under control!
The second trimester was pretty nerve-wracking too. It was mostly about me. What if something happens to me during labor? What if I get an infection and it gets in my blood? What if it takes me way longer to heal? My momma has already planned to come over and help with him after we get home (she’ll be at the hospital too!) but what if I need her and Curt to do more than we’re counting on? What if I can’t really be the mommy he needs for MONTHS? I feel his first movements, first hiccups… what if something awful happens and after he’s born I die and I never see any other firsts? Will he know how much I love him? Who’s going to teach him how a mommy is supposed to be? Will he know how much I love his daddy?
Finally I pretty much told myself to get a grip. There’s no medical explanation as to how my skin is doing so good or how we’re both so healthy. It’s all God. I just don’t think he’d carry us all the way to the finish line just to say “never mind!”. If something does happen, we got this. I’ve beat so much in my life I’m not letting anything get me down now!
I’m in my last trimester and my worrying has lessened dramatically…and praying has increased!
We had a birth plan from visit one: C-section! My doctor figured it’d be much safer and that we could take my little man out at around 30 weeks or a little after so my skin wouldn’t have to stretch any more than needed to have a healthy baby.
Much to my surprise, our last doctor visit I found out that was no longer the plan he had in mind. I’ve been banking on him giving me a little medicine, cutting a little then sewing me up and my baby would be here! That may not be the case… Since I’m doing so perfect and Mason’s growing amazingly good, he asked if I wanted to do a natural birth! I’d love to because I’m almost positive the healing would be much smoother and I’d rather stay away from infections. The only way we’ll go back to the C-section idea is if he’s a very big baby or if my skin starts acting up.
I just want Mason to be happy and healthy! I hope he has Curt’s dimples and huge heart and both of our stubborn, not-gonna-let-you-say-I-can’t-do-it personality, along with being sweet and sensible of course! I want him to know he can change the world! Even if it’s just by changing one person’s outlook on life. I want him to know that as long as he has faith, he can do ANYTHING!
Thank God that I got my stubbornness, strong will and fighting side from my momma! She always has been and always will be my hero. When everyone else doubted me, she KNEW I’d make it. Giving up isn’t an option for us… She knew God had bigger plans – he doesn’t give you anything you can’t handle. I believe that with everything I have.
I wasn’t supposed to make it 5 minutes, I’m celebrating my 20th birthday Tuesday and will be welcoming my baby boy into the world any day now. Tell me I can’t do something!