My Story *revised*

Many of you who follow this blog (thank you!) know that I find a real passion in writing. It is a great creative outlet for me. I publish to my own blog for my family and friends and each week I do a post called "Thankful Thursday" in which I take time to write things I am thankful for that week. This week, I will be out of town on a pioneer Trek so I wrote a post called "Thankful Trekful Tuesday". I have decided to post an excerpt of it here on this blog. I hope that you will take the time to read it, as it means a lot to me. 


**This post looks quite long- though I feel really strongly about it. Please, if you get the chance- make the time to read it. If it's easier, you can copy and paste it into word as the format for my blog makes it especially visually unappealing to read. If you copy and paste it, it is 1 & 1/4 pgs. Thank you**


From: How to Save a Lifeguard:
...I also decided to change it up this week. So often I talk about how thankful I am for things that are pretty vast, general, and I repeat them a lot (not saying this is a bad thing). This week, I wanted to be more specific. I think that when we get more specific about the things we are thankful for, it makes us.. well.. MORE thankful for them! Here goes..

My oldest sister and role model, Mica

Operation Smile

       I KNOW it seems like I am breaking my own pledge on making things more specific and this is no exception as Operation Smile is included in almost ALL my TTs, but please hear me out- this is actually what I am most thankful for this week.. month.. life.

Specifically: My best friend and older sister Mica has a birthmark. On her face. It is called a Port-Wine Stain. I guess since I have grown up with her my whole life as my role model, I tend to forget about it. This last weekend I went and hung out with her and we got into some good conversation. We discussed her birthmark and I asked her how she felt about it. She has had over 10 painful laser surgeries to date to reduce the discoloration of the skin (there is no cure or complete removal possible). As you can see from the photo, the stain covers a great deal of her face, gums, and scalp. I knew that  sometimes she was uncomfortable with it- but I never really understood till this week. She said she hates it when people give her that "double look". She has gone out to the store or public only a few times without makeup on (she has to use a thick type to blend it in) but the last time she did, she was checking out and the cashier had the nerve to make a snooty comment and advise her that there was makeup she could wear and to wear it.. I cried.

My sister and her beautiful family (minus the brand new addition)

This was not the first time something like that has happened. She talked to me about how she feels people look down upon her when she is with her kids- like she is an incompetent mother or something. She is the best mother I have ever met in my life. I wish I could be half the loving, supportive, teaching, and selfless person and mom she is to her 3 beautiful kids. She is such an amazing friend and she would do anything for my good or happiness. She is always there for me and there is no one else I feel more comfortable talking to. She is genuine, hardworking, sincere and smart. She is such a beautiful woman, inside and out. It makes me sad but more so makes me so angry at the fact that my own sister won't make eye contact or look up if she isn't covered up, just because of the way people perceive and judge her over something she had no control over. I told her that I can't even see it- I never did, I don't think. When I look at her or pictures of her, I just see- well.. her. The birthmark is part of who she is, but I don't see it as a distraction or anything like that. It's so hard to explain but I just can't see it. But, she explained to me that SHE sees it each and every single time she looks in the mirror- the way she has seen it for her entire life. For years and years she was teased mercilessly in school and I can only imagine being an insecure elementary school girl with a huge purple splotch over half my face. How about junior high, when looks and appearance are so high on the priority list- they are the things that will gain you friends or popularity or respect? High school? Stereotypes and hundreds of kids in the halls. What about being invited to go swimming or to an activity that makeup is not possible to use? And not just in school, but after. Like the cashier at the store? This is a mark that will never leave my sisters face. Ever. She has to live with her for the rest of her life. Even though I didn't know it that well, it effects her daily life. Due to the mark on her face, her self esteem has suffered and has been an enormous struggle for her.

My two older sisters, Lina and Mica (l-r)

I can't begin to explain to you how deeply this conversation hit home to me. All my life I have never seen my sister any different than anyone else, other than she was far more amazing than anyone I had ever met. But- others do. Others.. complete strangers.. passersby... they look at my big sister and judge her so much that she is embarrassed and not as confident in who she is... Solely based on her birthmark. Something that about 4 in 1,000 people get. Not by choice- not by consequence- definitely not by accident- but by chance. Nothing my mother did, or she did- made this happen. It's just what God gave her for his reasons. It makes me so mad. I am not generally an angry or bitter person- but this is something that just infuriates me beyond comprehension. Why would people look again? Stare? Tease? Judge? Why would they do that to such an incredible person who has gone through so much in her life? If only they knew her or her story.

Beautiful girl with a very dark PWS

So how does this tie into Operation Smile? Like I mentioned before, As I was explaining to Mic that I didn't even notice, see or think about her birthmark.. ever- She told me that she sees it, and that other people see it. It immediately brought me back to my first day in the hospital on my mission. I saw this girl (above) and many others like her. The child life specialist-- Leslie, told me about Port-Wine stains and how her son has one. I had never heard that term before as I had only heard my sister's referred to as a birthmark. I thought of Mic and how hers was just about the same. I met many nervous and embarrassed parents those few days in screening- but I saw comfort in their eyes as I drew or hand gestured that I myself had a sister with a similar condition.

       If you read about my mission on my mission blog, you may have read what I said in this post:

"Today, a bunch of us were talking about patients we saw yesterday and they were saying like oh yeah- he had the bilateral cleft, or she had the big burn on her face-- I found it kindof crazy that I didn't remember. The biggest thing that I remember yesterday about the kids were their eyes. I didn't really remember who had what deformity or what was wrong with them. I remember their enormous, infectious smiles and their happy spirit."

Another slight port-wine stain in Jordan

I did not even think about this at all at the time of my mission- but that is MY sister. I didn't even think to compare her to the poor scared children in Amman and from Palestine.. but today I realized it. I didn't see it- because I just don't. I can't. Every child that is born with a cleft lip, palate- or other facial deformity like a 3 inch gaping hole in the middle of their face.. these people do not CHOOSE to have this happen to them. There is NOTHING that can be done prior to, that will prevent or stop it.. Yet, it does NOTHING besides create a visual deformity-- not a deformity in their SELF or being. Only after people do not accept them for who they are or tease or judge them does it start to affect the heart. I am SO thankful that my sister has given me that gift- the gift to see past. She did it unknowingly. I only see her (like the kids in Jordan) as the beautiful, vivacious  people they are. I think that she is so incredible for the person she is and can't stand the thought of anyone thinking otherwise because of the mark. I think that my realtionship with her helped me in a way to feel this way on my mission just as much as those kids in Jordan helped me to realize this today in my own life.

LONG story short-- I am so thankful that I have had my eyes opened wider than many others. The others who do not know the story and the people and the spirit behind what they see on the outside. I am so thankful that Operation Smile does what a simple application of makeup does for my sister. It removes the cleft or burn or other such deformity that takes away a sense of self to those individuals. It gives them higher self esteem and a new chance at life without having to be judged, labelled or ridiculed. It gives them a second chance. I asked my sister if she would receive surgery if she had the opportunity if it was free. She said it was tempting, but of course she said she would feel selfish not being able to care for her kids for the time she was out recovering. However, I know that if she had the choice, she wouldn't have had the mark in the first place. If she could have the mark magically disappear from her face, I know she would and it would change her life drastically. 


How amazing is it though, what we did in Jordan and all over the world every week? It gives me joy and comfort to know that each of the 104 patients that received surgery this Spring are happier and more secure now because of something I was involved in. It is truly changing and transforming lives of not only the patients themselves, but their parents, siblings, aunts, uncles, children, friends and loved ones. It effects them too. Every single person who is a part of this cause has been a part of doing something that will forever impact someone's life. YOU have that opportunity every single day whether it is through something small, or significant- to be a part of that change. I have, You have, WE have the power to Be the Change. To me today, each one of those patients in Jordan is my sister. Each one has experienced pain and trial in their life due to something they had absolutely no control over. Each one has had difficulties, decisions, conflicts, many tearful days and wishes upon stars to rid themselves of their deformity. I am so thankful that I have more empathy for their frustrated families who know the real person inside each body who- like me, have the ability to see past. You too, can be that person.

Thank you for reading my simple post-turned novel.. This is something that has really touched me this week and I will never forget it. 

Hope you have a wonderful, safe, fun and peaceful week as I trek to the wilderness.

Always remember to share your smile.

Love Always,

Lis

Ps: Thank you so much for your time. Please feel free to share this story and post about it through your own means.However, I just ask that there be a referring link back to this site: (BountifulToAmman.blogspot.com)