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!

Sunday, February 15, 2015

Because Ichthyosis mommies are tough too.

I want to start off by stating that this isn't only directed towards my own mom but all moms of Ichthyosis affected children..I'm sure sometimes you think things you do for us go unnoticed or even that it's just part of your "momly duties" but you'll probably never know how much we truly do appreciate the things you do. Even if we complain.

Dear "mom",
Thank you for taking such good care of me. Thank you for being so strong and keeping it together when I know it was harder to handle than I'll ever be able to imagine, for never getting too tired to care for me. I know you have a whole other list of responsibilities vs. other moms.  Thank you for keeping me bandaged, putting lotion on me and helping me bathe when I needed you to.

Thank you for making me live a "normal" life, for making me go to school even when I was faking my skin hurting.... You could always tell when I MAY have been exaggerating a little. Thank you for making me take care of my skin properly even when we both knew it hurt so bad. You also knew it'd feel better in the long run. Thank you for not treating me like a science experiment. I know most doctors just wanted to help but in the end I was still your baby and not a lab rat.

Thank you for not ignoring my skin disorder. For teaching me to always laugh when the choices are to either laugh or cry. For teaching me  to stick up for myself, that I deserve nothing but the absolute best in life. Thank you for always standing beside me. I could always see how proud you were and how much you loved me by your smile. When people talked and stared, you were the first to take up for me and when I got older you taught me to take up for myselft. You'll never know how much that has helped me in life.

There are so many things I'm thankful for that I'll probably never get around to telling you but a few lessons that I learned from you, that I'll teach my own kids are--
>Have faith. God doesn't make mistakes, God knows us before we're even born. HE sent me to you and you to me. We're a great team
>Prove people wrong. Your stubborn way of living life has impacted my life in so many ways. Thank God it has. I have no idea where I'd be if I wasn't so stubborn.

 Dear mom,
I'll never in one lifetime be able to express how grateful I am that God sent me to you. Did I make life easy on you? Not by a long shot. But you're my best friend, my hero. People talk about how tough Ichthyosis kids are, they forget that we were raised by tough mommas/daddies.
Thank you for being my momma.

Love, your ichthyosis baby.

Monday, February 9, 2015

Sometimes you have to start fresh.

Do you ever feel overwhelmed? Maybe it's when your "to-do" list is full, maybe its when your house is filled with clutter.. That's how I was feeling every time I logged into my old blog. So much I wanted to write but there were so much JUNK on my page, old posts, too many pictures, links, no organization. Sometimes less is more. So here it is... My brand new less chaotic blog!. :)

Just to give new readers and old readers an update. --

I'm Stephanie Turner. I was born March 19th, 1993..Harlequin ichthyosis is a very rare genetic skin disorder. It is the most severe type of ichthyosis.
Harlequin ichthyosis is caused by a mutation of the ABCA12 gene, and the baby receives one mutation from each parent, who are carriers but do not display any signs of the condition themselves. 
Because of this mutation, babies with Harlequin lack a protein that helps the top layer of their skin (the epidermis) form correctly. To try to compensate for this missing protein, the body makes too much skin, and the body can’t shed it quickly enough.
Babies affected with Harlequin are born with extremely thick plates of skin – almost like armor – with deep red fissures over their entire bodies. This thick skin pulls tightly, causing deformed facial features.  The eyes are pulled so tightly that the lids are flipped inside out and bright red from irritation. Often the nose and ears are barely able to be seen under the plates of skin. And the fingers and toes are contracted and shortened due to the pulling of the thick skin.
Immediate concerns after birth are infection due largely to the deep fissures, dehydration, and breathing, because the skin restricts movement in the chest.
Eventually, the original skin wil peel off, leaving reddened and flaky skin underneath. However, dehydration, temperature changes and infection will always be a concern for children with Harlequin ichthyosis because their epidermis doesn’t regulate their own body temperature, hold in moisture or keep out bacteria.
Until recent years, babies born with Harlequin rarely survived past the first few days, but with recent advances in neonatal care, more infants with Harlequin are surviving now. 

At eighteen I met a wonderful man named Curtis and we were married three months later...When ya know, ya know. Ya know?  Now I'm almost 22.. I have a great husband and TWO absolutely perfect babies..First person with H.I to ever have babies. Kinda excited about that!
Olivia Marie-- Nov 5, 2014
William Curtis-Drake-- May 25, 2013

I'm a social media nut [twitter, instagram, facebook,], I'm very outgoing, I take entirely too many pictures, I'm sarcastic, I'm pretty funny if you ask me, my kids are my best friends, I'm a stay at home mommy and I hardly ever get offended. Oh, and I talk........Alot.