12 March 2013

This is Me. This is Real.

To be completely honest, I debated a good month or so about writing about this, because I don't want to be known for this "label/diagnosis"

If you have been around my blog and seen any of my pictures, you may have noticed I look different, you may have shied away from reading me because you thought I looked weird, but I seriously hope you stuck around to learn about me, and to share in my blog.  If not, I guess that's your loss!  

When I was born, I was diagnosed with what doctors call frontonasal dysplasia.  In English, it basically means, my ears are smaller than most, my eyes are farther apart, and my nasal cavity isn't what it's supposed to be.  

From what I have found on the interwebs and google, I have a very mild case of it, my nose is in one piece and I don't have a cleft lip.  

Ever since I was young, I have gone yearly or every few years to an all-day appointment down at the U of Minnesota.  I have had multiple surgeries, multiple long-term(more than a week) hospital stays, & a few stories that I am now able to look back & laugh on.  

A couple stories before I get to the rest of the post, one of the surgeries I had, I believe it was when they put the shunt in, but I can't remember, for sure, they sewed my eyes shut because they were afraid that if they didn't the brain pressure would cause them to pop out of the sockets, well when they sewed them shut, they had me under anesthesia because they did it right before surgery, but when they unsewed them, I was awake for the procedure, and my Dad was in the room when they were doing this, and I was yelling, Daddy kick the nurse, Daddy hit the nurse.  My Dad's a police officer, so I thought he could do whatever he needed to do to not have me in pain.  Keep in mind, I was only 7 or so at the time.  

Another time, I think it was during this same hospital stay, my mom had gone down to the McDonald's in the tunnels below Children's and the nurses were trying to force me to take medicine, and my mom says as soon as she got off the elevator, she could hear me screaming from the other end of the hall.  I just didn't want to take it, I guess! 

& now a few, you mess with my sister/daughter stories, I'll mess you up from my family:

When we were skiing one weekend up by my Dad's house, Lynn, my stepmom had taken us by herself & this kid starts spitting on the bag that I'm carrying and making fun of me, she went up the stairs after the kid, and said, keep it up & I'll kick your ass, now my stepmomma is not a violent person, very calm and collected.  

& Ryan, my younger brother, has punched a few kids because they were making fun of me. 

& when my stepsister Becky was younger, we were both at the park and some other girls were making fun of me, so she walks over to them & gave them an earful.  

Mady has always gotten upset about me being made fun of, she is very protective of me(at least for that reason, most others she picks on me!)

Some people have asked why I look the way I do, my answer is always, because God has a special plan for my life.  I would much rather look like this, and have my faith in God, then look "normal" and not have Him.  Or like I told a girl when I was cashiering after she called me funny looking, TWICE, I'd much rather look like me and have manners instead of looking like you and having none at all.  

I have been blessed with not only great parents and great stepparents, but an entire family that has never let me be treated like any less.  I have been asked before, if I would like to be a part of a support group for frontonasal dysplasia, and I've always turned them down, because I don't let this define me, and I forget I have it until somebody keep staring at me.  

Please, don't hesitate to ask me any questions you have, & I just want to let everybody know how much you all mean to me!  

linking up with Shawn & IA for Talk to Us Tuesday


  1. YOU ARE AMAZING. Period. You have such strength. I dont think I would be able to deal with all you have dealt with. You are an inspiration. XOXO

  2. You are awesome and and so tough! Such a great post and inspiration!

  3. Replies
    1. You are beautiful, Meghan!! I don't comment often, but I continue to read!! Thanks for sharing your story!!

  4. Meghan, As I read this post, I felt like God was whispering in my ear if that makes any sense. God was reminding that I knew what it felt like being made fun of and called names. I was called fatty, four-eyes (because of glasses) and so many more names that I can possibly remember. I know that my emotional pain that I felt as a child is no where near the pain you felt. But I want to say that you are an inspiration. Thanks for posting this.

    My oldest son who will be 12 yrs old this week is special needs. He has High Functioning Autism. He is made fun, called names, and it breaks my heart. I hope that in the future my son can be as brave as you are and tell someone off when they are being rude and mean.

    You are amazing.

  5. I love your strength! Thank you for sharing! You are such a special girl and I'm so glad to have gotten to know you. Love! Xoxo

  6. Sounds like you have a great family. People can be really mean :(

  7. I can tell you have a great family just from reading this. It's always funny how we can make fun of our family/siblings but the minute any one else does it's on! haha

  8. You have a wonderful outlook on life! Thanks for sharing you beautiful story!

  9. Great post! Thank you for sharing! And I love your comeback when you were working as a cashier!


  10. You are beautiful inside and out :) family is the only thing that matters in the end. I enjoy reading your blog <3

  11. Beautiful you and beautiful post! Thank you for sharing!

  12. Newest follower here! I found you through the blog hop :) You have a super cute blog, I can't wait to read more.

    You can find me at meandmr.com

    -Melanie @meandmr.com

  13. You are beautiful! I'm glad I found your blog ages ago. :)

  14. I love reading your stories about your family, they sound so awesome and supportive. I think it is 1000% awesome that you don't let labels define you. I am so sorry that you have to deal with rude and mean people from time to time - you have it exactly right that above all I'd rather be kind and a decent human being any day!

  15. I think you are amazing! Love you!

  16. Seriously, this post had me tearing up. You are a beautiful person. You are a true inspiration and I am so thankful for all the love and support you have given me.

  17. "I'd much rather look like me and have manners instead of looking like you and having none at all."

    Amen, friend. I am proud of you for sharing. I hope no one avoided your blog based on your pictures. I've loved your blog since I discovered it last year!

  18. I love your positive attitude and admire your faith. xoxo

  19. You really are such an inspiration! You are absolutely beautiful!

  20. Thanks to someone posting a quote from this post on Twitter, I'm here. Social media success!!!!! Seriously, I'm so glad to have found your site and I love your spirit and personality. Thank you for sharing these genuine words of grace and beauty and acceptance and respect and TRUTH. God bless you, new friend.

    Blessings + Hugs,
    Nicole @ Three 31

  21. great post! I love your honesty and relentlessness! Hope your story can help others!

  22. Great post, thanks for sharing. You have a wonderful attitude.

  23. Great Post. I love that you are so positive.
    I have a son with autism and I know one day someone is going to pick on him (so far no one has) and I hope he can be as positive and strong as you. I have learned that all people have looks and they aren't on the outside, its on the inside. So everyone should learn to look for that and they will find alot of beautiful people.

  24. This post is amazing, thank you for sharing and you go girl!

    Sparkles and Shoes


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