Why am I thankful for Ichthyosis?

As most of you know I was born with Harlequin Ichthyosis. In the spirit of  Thanksgiving I've decided to write reasons why I'm so thankful for being born with such a severe life threatening skin disorder.

1. My disorder has effected my outlook on life in such a great way. I know life is short and I try not to take it for granted.
2. It's made me be able to stand up for myself. Oddly enough, it's made me have confidence. With such a "different" appearance you have two choices in life. Sink or swim. Let people who talk, stare, whisper bring you down OR you stand up for yourself. Try to educate them. 
3. It's taught me it's okay to laugh at life and yourself. Being red has given me many jokes! Lol. 
4. I feel blessed that God  knew I was strong and determined enough to live with this disorder. He knew I had to be strong, determined, outspoken and stubborn enough not to let things bring me down. 
5. You realize whose your friend when push comes to shove, some will bail on you when people are giving you a hard time, some will stand by you and defend you as you're defending yourself. I'm so thankful for my great friends!
6. I never have chapped lips! My aquaphor that I have to keep on takes care of that problem!
7. I bleed easy but I heal super duper quick.
8. You don't have to worry about tanning, there is no need for it!
9. You can incorporate your skin into your Halloween costume... I was piglet this year with my family. ;)  
10. I don't have to worry about shaving or haircuts and when I wash my hair I can leave it in the sink then let it air dry on the wig head. 
11. It's an easy way to get out of school "sick", let me tell ya... I abused this power tooooo much in school. My skin hurts? Stay home!

When I decided to write this post, I asked a few other people to add in why they were thankful to have Ichthyosis. Here are some of their reasons:

"I am thankful for having ichthyosis as it's given me perspective, a reason to write and speak about the importance of celebrating appearance diversity and also wrinkle free skin. I am almost 33 but still look 23!

Writing and speaking about my condition has connected me with an amazing community - and I feel so lucky to have these friends in my life. My friendships have gone from online to real life - and it was a delight to meet so many people with ichthyosis on my recent trip overseas."- Carly Findlay; Nethertons Syndrome. Age 33.

Carly's blog.

Carly's twitter.

"Life is brief and moments of happiness are briefer still. Some of the best moments of my life have happened because of my Ichthyosis! Because I was born into my circumstance, God has blessed me with wonderfully supportive family and friends for when I can't face it alone. But why would I want to go it alone! Because of my Ichthyosis, I have been welcomed into such a loving community of folks who understand exactly what I'm going through on levels that my own family doesn't always understand.

Life will always have its ups and downs, but I choose to see my Ichthyosis as a giant up! In my 20 years, I have learned a lot about people. One of those big lessons is that we always seem to curse our circumstances. We get too caught up in "woe is me" or "look at me, I'm miserable." I'm not saying that it is always easy. There are hardships! But there is always a light in the darkness. We only have to look for it!"- Hunter Steinitz; Harlequin Ichthyosis. Age 20.

"I got given the slightly unlucky pick of Harlequin Ichthyosis...still. you can't have have everything can you?! You only get one shot at life. So you might as well give it a go. I am thankful for having Ichthyosis because it's afforded me a great life. A life that would be very different had I not been born with Ichthyosis. I'm grateful for the myriad of people and connections I've met and the opportunities that have come my way. People in Asia talk about 'Guanxi', influence and networking, and that is something I am grateful for in a society that is otherwise ignorant of those with difference. The family is also something I am grateful for as well because without family, I don't know where I would be. I write a blog called The IchthyRef. I write about my life and what it's like to live a life in Hong Kong with Ichthyosis. The good, the bad, the downright crazy." Mui Thomas; Harlequin Ichthyosis. Age 21.

Mui's blog.
Mui's instagram is muixthomas

Princess Olivia has arrived!

Olivia Marie Turner made her grand appearance November 5th weighing 7lbs 5oz, she was 18inches long. She is just as perfect and healthy as her big bubba!

Birthing story...
As most of you know I had a repeat C-section. When I had Willie I was in labor for two whole days because they induced me and the doctors thought a vaginal delivery would be the best way to go. Little man had different plans. On the third day we had an emergency c-section because my cervix was too small. I ended up having to be put under anesthesia since my epidural was only working on one side of my body. It was the scariest moment in my life, everything was so fast pace and hectic.

Olivia's entrance was much more calm.. We went in at 7:45am, I was prepped and back in the O.R by 10:30am... Since we knew I was going to have a c-section, I had a different type of epidural and it worked wonderfully. A little pressure and a bunch of  "tugging" later, I heard my babygirl cry for the first time! To say it was magical is an understatement... Moments later I was sewed up and on my way to the recovery room with our new little princess. When they wheeled me in, the first thing I saw was Curt in tears holding our daughter in the rocking chair with such pride in his eyes.... Well most of it was pride, the rest was fear LOL.  We know having a little girl is a whole different rodeo. Not completely sure if we're ready for the ride but ready or not, time to saddle up! I was only in the hospital for two days after I had her.

Our new home life...
As soon as Willie saw his sissy he was excited to give her a big slobbery kiss. Mouth opened wide, slobber streaming, me smiling from ear to ear! His mouth covered her entire face lol. I'm pretty sure he thought she was a babydoll at first but then she moved, woah! He was only able to spend a few hours with us... A hospital room isn't the best place for a active toddler!

When we came home he was ecstatic to see mommy and daddy but a little confused as to why we had to bring the babydoll home from that place! I mean he already had plenty of toys, right? haha! He didn't acknowledge her much right away but the first time I changed her diaper and she started crying the "big brother" in him came out quick. He was hitting my leg repeating "noooooo" with a worried look in his eyes as he watched her closely. I tried to explain to him that she had to get a dipey change and she was okay. I kissed her, he kissed her, soon all was well!

She turned a week old November 12th and at this point shes just another member of the family, like she's been here all our life. Willie is a wonderful big brother, checks on her when she's fussing, gives her a paci and sometimes helps me feed her by holding the bottle. He's very gentle with her except when he's all hyped up and playing then decides to give her a little "patting" which is sometimes too rough for my liking but all we have to say is "eaassyyyy" and he calms down and is back to being gentle. As of right now though, I think we've both decided she's pretty boring. LOL ;)
We're currently staying with my mom until I heal up a little more but my incision is looking great and healing up as quickly, if not quicker than it did after I had Willie.

Thank ya'll for all the prayers, positive messages and comments on our facebook page, instagram, email and twitter. They mean more than ya'll know...It's crazy to think that I've been blogging through two pregnancies! We've met some awesome people through our blog and hope to meet MANY more. Of course that means I'll have to step up my blogging game since I've been slacking off here lately. It's absolutely on my "to-do" list and hopefully it'll be easier to do now that we're getting a routine back. I'm pretty excited about what else God has in store for our little family. 

Excuses, I know.

I can't even remember the last time I updated my blog. I'm a bad, bad blogger...
Since its been so long, let me catch yall up.

Last month I was in the ER due to contractions happening like crazy and I was only 35 weeks at the time.. They gave me shots to stop them, luckily I'm only dilated to a fingertip.. I'm currently 37weeks now though... Yaayyy. We've set my scheduled c-section for November 5th. We're so so excited! We're all ready to see miss Olivia Marie! Everything has been going flawlessly with the exception that my doctor placed me on bedrest so I'd stop having contractions.

Willie is just getting smarter by the minute! He's 16months and absolutely perfect. He's got such a big personality and he's so funny and happy.... He has hit the "fit throwing" stage though, where he throws himself onto the floor and looks at you like "Um, mom... Don't ya see me? It's time to give me what I want.... Right now!" but that's mainly when he gets sleepy and grumpy. We just let him do it, when we act like we don't see him he gets up and acts like it never happened, haha! He's fascinated with my big ol' belly! Everytime my shirt is up over my belly he pokes it and laughs hysterically! It's soooo cute and a tad bit insulting LOL.

Curt and I are doing great, both happy and healthy!

This is mainly a late night post just to let yall know we're still alive lol. I'll update more soon...
If you want more updates feel free to follow me on twitter @StephUncut or follow my facebook page "LifeAsMeDotcom". I try to update them regularly and with pictures. Thank yall for reading!!

God bless.

Willie is ONE!

On May 25, 2014 I became a mommy to a ONE year old! Such a bittersweet moment for me... My baby boy is now my baby big-boy! The day I found out I was pregnant I fell in love with him, I fell in love with this sweet little miracle that I was growing inside of me. Little did I know I would fall even more in love with him when I held him in my arms! He was 7lbs 10oz when he was born, today he's over 27lbs and completely my life.

In one short year he has grown so much! Heck, he's made me grow and I'm not just talking about making my butt wide. Haha! In one year he has gotten such an amazing personality, he's always laughing and smiling, he never meets a stranger and loves making new friends. Since we stay at home all day he don't meet TOO many new kids but boy when he does he lights up! Sometimes we visit my momma at her pre-school/dayschool and he goes to the baby room and goes straight to playing and doesn't even acknowledge me (alright, I admit it makes me a little sad lol) and in the nursery at our church he always heads straight to the little blue eyed blonde haired sweet babygirl that's in there and when we leave he's playing trucks with a sweet little boy! He's such a flirt already, there's no doubt that I'll have my hands full in a few years. All I can do is raise a gentleman and pray like crazy! lol. 

He loves outside. The trees, the birds, all animals (even though cats tend to hate him! lol) and ain't scared of anything!.... Could be a bad thing or a good thing, we'll see! He is a climber and thinks its HILARIOUS to scare the crap out of me. His favorite food is by far sweet potatoes and cheetos. Hates green food like his momma but we're gonna have to fix that. He only takes a few steps at a time right now because he gets a little nervous but he's taking more steps everyday which of course is giving me a heart-attack. He loves phones and can spot one across the room, under a pillow, pretty much anywhere even if it's not lit up. Refuses to play with old phones that doesn't work, the ones I'd let him play with! Funny story: he had my phone the other day and when I got it and noticed it, he was FaceTiming with a facebook friend! lol. He loves figuring out how things work, wheels, trucks, tractors and throwing and catching a ball. Even though his "catching" is actually getting hit in the head and laughing about it. lol.. 

He can say momma, dad, daddy, bye, hey, papaw, Donna (his mamaws name) & he's been saying bubba for a while although I'm not sure why because he's getting a sissy! haaha. Ya know how if you say "no" and move something or distract a baby with something they'll usually forget what they were doing? Well not ol' Willie, after he's done playing he'll return to whatever he got in trouble with! Before he does something he's not supposed to do he'll look at me to make sure I'm not looking and if I am he'll grin for ear to ear and quit lol. He's a mess I'm telling ya! Rotten!! :)

As you may can tell, I'm pretty fond of him and pretty sure I'm gonna keep him. hahaha! He's my favorite little boy in the whole wide universe!

IAM; I am more.

It's Ichthyosis Awareness Month, I almost missed it!

IAM: I am a 

woman

daughter

sister

aunt

mommy

wife

Christian

survivor

I am more than my skin. 

If you don't know me, let me start off by saying I'm so glad you're taking the time to read my blog! My name is Stephanie Turner and I was born with harlequin ichthyosis 21 years ago. 21 years ago seems like a million years ago in the technology and medical world. When I was born babies with Harlequin Ichthyosis just didn't survive. My mom was 19 years old when I was born and had no difficulties during her pregnancy at all and given that it was 1993 ultrasounds weren't able to detect my very rare but severe skin disorder. My mom went into the hospital for leaking amniotic fluid only a few short weeks before the due date she was transferred to Memphis, TN which is an hour away from our home town because our local hospital didn't have what it took to deliver a "dry birth". Thank God she was transferred to Memphis!

 When I was born the doctors were very shocked of course and they immediately wheeled my mom into a tiny room and she pretty much just had to hang out there for a while, meanwhile nurses and doctors were constantly coming in and telling her to be thinking about funeral arrangements for me because the chances of me surviving were slim to none.... and closer to "none". They literally had to  blow off  the dust of this huge medical book which had a tiny paragraph talking about H.I. It was very little info because babies usually didn't live longer than a few minutes or hours due to infection, dehydration, skin tightening around the chest which causes suffocation, etc.. Babies affected with Harlequin are born with extremely thick plates of skin 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. With time, the original skin will peel off, leaving red and flaky skin underneath. Although, dehydration, temperature changes and infection will always be a concern for people affected with Harlequin Ichthyosis because their epidermis doesn't regulate their own body temperature, hold in moisture or keep out bacteria.

Thanks to God, my strong determined momma and great doctors- I've beat the odds! Not only by living more than a few days but living 21 years! I was raised to not feel sorry for myself, what good does that do? Instead- laugh when you feel like crying, be hard headed, don't give up.. Most importantly, have faith! Have faith in God, he made you... He took his time to create every little part of you. That nose that you think is too big? Forehead that's too wide? Zits that just wont stay away? God loves it! He knows it's beautiful! You're beautiful. You need to know that and never ever forget it. 

Just a few accomplishments in my life? (In order of which they occurred)
-Scored a Cabbage Patch doll from my first crush in Kindergarten! (Playaaa playaaa)
-Had a cutie chase down my wig that blew off while playing outside at recess! (Also kindergarten! My wigs never really been a secret)
-Was a cheerleader for 4 years in middle school! 
-Homecoming maid for 3 or 4 years as well! 
-Had my first super serious relationship at 16
-Broken heart at 17.9! (so close to 18!) lol. 
-Fell in love at 18 1/2
-Married at 19 (when you know, you know!)
-Had my son at 20! Was the 1st person with H.I to ever have a baby!
-Having my daughter at 21. :) 

Most people are so shocked that I've had such a "normal" life. I truly think life is what you make it. Granted I'm beyond blessed and live in a very small southern town where everyone knows everyone so I'm not meeting tons of new people everyday but don't think for a minute I haven't put up with an outrageous amount of stares, whispers, nudges to a friend to "look at her face", ridiculous questions, silly assumptions and insulting comments. You learn to deal with it in your own way. Some people get mad, some people get hurt, some people roll their eyes and keep walking.. Some people like myself try to educate people on what my skin disorder is. If they're still rude then sometimes ya gotta get rude back! To each their own. 

Think that's the end of my story? Not even close! Follow my blog to follow my little family's journey through this crazy world. Husband, mommy, 1 year old son and baby girl on the way! Life's fun! :)

Be careful what you post online!

Tonight Nusrit also known as "Nelly" sent me a facebook message letting me know that she recently found out about  video on YouTube that we were unknowingly in. Apparently a guy named Bill decided to inform people that there are no such thing as "snake babies" they were just H.I babies! How darling of him, right? Well I didn't think so, neither did my friends and family and most "strangers" that keep up with my family. Whats worse is that he included a picture of my baby boy! I mean, I know hes pretty dang perfect and all and sure I didn't look half bad myself to have just been in labor for 3 days and gave birth to a chunkybutt ;) but I'd like for him to ask permission or maybe not compare me to a snake baby but ya know, that's just me!

When I first saw this video I'll admit I was livid! I instantly called my momma (what else is a girl to do?) in tears. I felt so helpless, so insulted, taken advantage of to say the least. I've always wanted to help people.. Even if its just inspire them to be proud of who they are. I know God didn't create me and plan everything about me so I could sit at home and watch Friends everynight. Sure, I enjoy Friends and even George Lopez sometimes if I'm having a wild night and feel like staying up past 10pm! But I know God wants me to do more. I was born to help, educate, inspire, spread my testimony and be a mommy to two perfect kids!

As you probably guessed the video comments weren't going to be featured on "WORLDS KINDEST PEOPLE" anytime soon. (Okay, so I made that up).  Some of my favorite were-
"This is real, her mom was on heavy heavy drugs while pregnant."
"That's no skin disease, that's a curse from the devil!"
"Who the h*ll would f*ck her!?"
...Yep, they're sweet sweet souls! <3

I was so torn when I saw everything. One day Willie and Olivia will grow up and be on the internet. If I'm lucky they'll be writing, on some website playing Mario Bros. but they more than likely will be average kids or teens and be watching videos, listening to music and on whatever social network is cool at the time. I've learned that once something is on the internet, it doesn't come off. What if my kids or my kids friends stumble across the video? "Oh hey dude, saw your baby picture on a video last night! Your moms hot but why people think shes a alien made from the devil?". Poor Willie! (Just added in the "your moms hot" to make myself feel a little better! LOL) No kids want to hear that about their mom! What if he saw the hateful things people say? He'll hear enough without that video!

But I also want him to be proud of himself and his family. I want him to know people CAN be mean, cruel and plain ole hateful. Its his job to be one of the sweet people, people who don't judge, say hurtful things and I want him to be strong, confident, happy. I want him to know he's blessed in many ways and so dang lucky to have a red mommy cause not many other kids have one! LOL!!

After flip-flopping back and forth with my emotions and decisions I think I've decided to keep all the social media I have. Just be more careful about tagging pictures with my websites name and adding people to my personal facebook. I also messaged darling Bill and I have to say I'm very proud of how lady-like I remained throughout the entire message!

Watch Bills video here. Also read a wonderful post from Carly Findlay who also has Ichthyosis! The post helped me a lot tonight! 

Update of all updates!

I cannot believe how long its been since I last wrote a post! Can you say slacking? Since my last post I've had going on. So heres the update of updates! just to catch yall up since things are slowing down and I can get back to blogging! :)

1.) My papaw, who was battling cancer and so many more problems that go along with fighting cancer is now in heaven smiling and joking around with Jesus. I betchya he's catching fish like crazy!! I know he's giving everyone else in heaven heck! ;) 

2.) Willie is turning ONE Sunday, May 25! I cannot believe our little 7lbs 14oz baby boy is about to turn a year old. I'm so full of different emotions! Sad that time is flying by but so happy that hes so healthy and happy! He's truly my best friend!! 

3.)  Oh, did I mention Willie is going to be a big brother? I'm 16 weeks pregnant!! Unlike Willie, this baby wasn't at all but just like Willie, we're beyond happy and probably just as nervous! We go to the doctor Thursday, May 22nd and hopefully we'll find out the gender. 

sucking in

12 weeks!

So far everything is going wonderful.. I pray that it stays this way throughout the rest of the pregnancy! This will definitely be our last baby. We're making sure by getting my tubes tied. I know getting my tubes tied is a huge decision to make and I've been told not to do it because I'm only 21 and I may change my mind but I'm completely sure that I don't want to risk my health anymore especially with two kids depending on mommy! I'm seeing the same doctors as I did with Willie so (UAMS) hopefully there will not be anything we haven't dealt with before. Afterall, I'm a baby-having professional! LOL.