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.