Tuesday, February 17, 2015

Never be ashamed of your story.

As you probably know, almost twenty-two years ago I entered the world. My mom was nineteen and expecting a "regular" ol' life with a "regular" ol' baby. But regular is overrated, right?

My mom had a normal pregnancy, no worries until month 8.. She started leaking amniotic fluid and ended up being sent to Memphis, TN to a great hospital. I was born four weeks early and boy, did I shock a few people. Twenty-two years ago technology wasn't what it is today. There weren't high tech ultrasounds and there were no reason for fancy tests since there wasn't any reason to think there may be a problem. When I was born, I had big plates of thick skin covering my body with deep cracks in between, thick patches of skin covered my hands, my lips and eyelids were completely inside-out. The doctors rushed my mom into a closet-like room before she could even see me and quickly took me away to find out just what exactly was "wrong" with me. I am the 2nd oldest living person in the U.S with H.I.

The nurses eventually brought my mom a huge medical book and showed her the section that explained Harlequin Ichthyosis. The section was a total of three sentences.. That's all that was known about H.I at the time. Three sentences. The nurses kept telling my mom to make arrangements for my funeral, I wouldn't make it more than a few hours due to infections, dehydration, skin tightening on my chest, etc.. My mom's response was always "is she still alive? We're not giving up." hours turned into days, days turned into weeks, weeks turned into months, months into twenty-two years!

After staying in the hospital a month, I finally was sent home. Mom had to wrap me in gauze to keep me from getting a skin infection and to keep lotion on me which she had to apply daily, sometime multiple times a day all over my body. She also had to put eye ointment in my eye's to keep them from drying out. As I got older, my immune system kept getting stronger but that doesn't mean I haven't had my share of hospital stays. Skin infections are no joke for a red girl!

It may not sound like it to most people but I was extremely blessed. A lot of H.I affected babies have to have feeding tubes at night to make sure they keep gaining enough weight... Our skin sheds and grows a zillion times faster than the average person so we lose A LOT of calories daily.... Alright so a "zillion" may not be the actual number but close enough! Most kids visit an ENT often because our skin sheds everywhere, that includes inside our ears and nose which obviously makes it hard to hear and sometimes itches. According to my mom, "we visited an ENT a couple times but she asked a lot of questions and watched closely and it wasn't long before she felt like she could do it herself." so she did! She used tweezers to pull the skin out and a curette to get wax out. I never once remember it hurting and now I do it myself. Plus we had fewer ear infections.

For the most part I had a "normal" life with exception of a my daily skin care. I started talking pretty early and we think it's because everyone talked to me so much. It was just me and mom so we have always been pretty good buddies, she's always  talked to me. Home videos even show me being tiny and her talking to me like I was talking back, hahaha! My walking was a little delayed but she says she isn't sure if it has anything to do with my skin or the fact that she would pick me up with every little whimper I made. I wasn't walking until age two. She says that she does wish that a doctor would have suggested therapy early on because she thinks it may would have been beneficial to my range of motion and strength/flexibility in my hands. But 22 years ago doctors were thrilled with my progress and so was she.

The "normal" life became even more "normal" when I started Kindergarten. I remember skipping school so mom could go up to the school and talk to everyone about my skin before I actually started school.  It helped I guess because I don't remember being asked many questions and only one mean comment. I have always lived in this small town and went to a small school... I was blessed enough to have the same people with me in Kindergarten and my senior year.

I always hated the work part of school but ALWAYS loved the social part. Recess and lunch were my favorite. I remember one time in First Grade, after I started wearing a wig- we were outside during recess, the wind blew and blew my hair right off! Of course I was embarrassed but then a bunch a boys chased it down and brought it back to me! How funny is that?! Since I couldn't always go outside during recess due to the weather being too hot, I got to play with blocks or draw on the chalkboard.. I always got to pick a friend that I wanted to stay in with me. You wouldn't believe the kids who would rather draw on chalkboards instead of going outside. "PICK ME, PICK ME!"  I was also a homecoming maid for two years and a cheerleader for four years. I was pretty good at being social!

After high school, I had a few boyfriends.. Some long-term, some not. Went out, went to bonfires, done stupid things all teenagers do. Then at the age of eighteen I met this amazing man on facebook. for some reason I messaged him first, so unlike me. But thank God I did. Come April 11, 2015 we will be married for four years. After being together these past years, having two perfect babies; I think we're doing pretty good!


  1. You have an amazing smile and attitude.thank you for sharing your story with us keep up the good work and stay true to yourself.

  2. Thank you for sharing your story. You have a beautiful family!

  3. You are amazing inside out...:) God bless you and your family with loads of love!

  4. You are beautiful, in fact! Your face is so "well made", like we say in Portuguese. Hope you have good health and live a long life, with your lovely family!

  5. First of all, you are are really pretty, and secondly you are the bravest woman I have ever come across, cause um, we "normal people" stress about such petty things in our "normal life" while you, are just there sitting there were loads of courage and calling your life "normal" and well, yes, normal is pretty overrated.

  6. Cute family, thank you for sharing. I just ran across your story on FB. Pretty cool! ;P

  7. Rip Stephanie Moore Turner...I love you and you will truly be missed