And the healing continues….

When I decided to start this blog two years ago, my goal was to bring awareness to craniofacial disfigurements. To do that, I told my story; the good, and the not so good. I didn’t realize until the end that while I was trying to help other people, writing was helping me heal. My normal coping mechanism is ignoring and pretending nothing bad is happening. The emotions come out eventually, but sometimes not always in the best way.

While the blog gave me an outlet to heal, I realized about a year ago how much more healing I have to do. Since graduating high school, I have not associated myself with many people from my hometown other than the friends I stayed in contact with. I became more confident and outgoing and it led to me meeting some great people who I feel so blessed to call friends today.

BUT, because I was not putting myself into a position to see people from my past, I didn’t realize how much of a hold it still had on me until one random day when I  saw a woman from my old church. This woman is one of the nicest people and played a huge role in my life as a child. I have no negative memories associated with her whatsoever but, as soon as I saw her and my mom began talking to her it was like I transformed back into this insecure girl who was incredibly unsure of herself. I didn’t speak one word to this woman and quickly went on my way before my mom was done speaking to her.

I do not remember much of the interaction, but I remember my mom coming up to me afterwards and asking what just happened? It was like I had become a completely different person, or Saydee from several years ago. This happened again a few weeks later, only this time I caught myself. I was in our local Applebee’s and my mom informed me that a few people who I had graduated high school with were in the booth behind us.  I became very tense and jittery. I never spoke to them or even saw them, but I became instantly uncomfortable.

I have been dealing with this issue for about a year now and while it has definitely improved, I still get this nervous, jittery feeling when I see people from my past. I HATE THIS FEELING. I hate that I made so much progress over the last few years and yet, it only takes one person to put me back where I was.

I realize how silly it sounds when I try to explain it to other people. They look at me like I am crazy and overdramatizing the situation. Sometimes I think I am too. I realize this isn’t normal, but it is real and another reason why it is SO important for kindness and love to be a part of everyone’s life. It just takes one moment; one action to effect someone’s life.

Before I end this post I want to apologize to this woman from my church, and to anyone who may see me in the future. You more than likely were not a part of the reason that I am having these reactions. I more than likely think of you very highly. I hope to one day face this head on with confidence, but I am not quite there yet.


What A Year!

It was one year ago that I decided to challenge myself and write about my story and my thoughts about living with Crouzon’s Syndrome. Looking back, it amazes me at all I had accomplished in the 21 years prior to writing the blog and the year since then. I never thought my life was all that exciting, but reading my own story makes me realize everything I have been able to do. I have been able to advocate for a bill to bring awareness to craniofacial anomalies in the state of Michigan. I was able to see that bill get signed into law by the then governor of Michigan. I have spoken at numerous charity functions bringing to light my story and the need for children with craniofacial abnormalities to have a sense of comradery with one another. It was because of these things that I was blessed to have been awarded the Patient of Courage award given by the American Society of Plastic Surgeons. All of these things were accomplished before I turned 16. Now as a 22 year old woman, I am even more grateful for the road God has put me on and the obstacles he has put along the way. Because of this blog I have been able to reach people from over 40 countries around the world. I have been contacted by people with children with facial disfigurements as well as people who have facial disfigurements themselves. I have also been able to educate people who were never aware that behind the appearance, there is a story from these people that needs to be heard. This past summer I was even approached by a television production company in the UK and was able to tell them my story. That was the purpose of this blog. To educate, and to bring awareness to the stories that need to be heard. I am so grateful for everyone who made this blog what it was.
Now that is once again February 1st, feel free to look through my blog. I continue to celebrate February as Craniofacial Awareness Month and I hope you all will take the time to make yourself aware as well. We still have a long way to go in educating people about this population of people. Hopefully one day we will be able to say that the stigmatization of this population is a thing of the past.


Beauty Isn’t Perfection

I am currently finishing up my third year of college and taking exams and getting grades back has my anticipation shooting to new heights. 
Now I am a weird person. When I turn in an assignment, I never expect to get 100% on it. When I get those papers back with that grade I am confused. When I get the assignment back with the 85% or the 95% I am satisfied. Why do I have this mentality? Why can’t I just be happy like everyone else and move on? 
I know my assignments are not perfect. I always have room to improve. Whether it is my writing skills, my critical thinking skills, or just expressing myself. I am the same way with life. There is always something we are trying to change about ourselves. 
Whether it is our hair, our weight, etc. we are always striving to be perfect at sports, or an instrument. If I have learned anything in my 21 years of life, it is that perfection is unattainable. The picture frame is never going to be PERFECTLY straight. The circle will never be completely round. It may look perfect, but the imperfections are still there. 
We can strive to be the best we can be but that is a never ending cycle. We will probably never maintain the perfect weight all of the time. Our hair or makeup will never be spot on all of the time.
So why do we obsess over these things when we can enjoy our imperfections? Do you realize how dull life would be if everyone was perfect? Our imperfections make us unique and I for one am going to start enjoying my imperfections because they make me who I am today.

I’m back in the mitten

I wrote this blog on the plane ride back to Michigan Tuesday night but did not have a chance to post until now 🙂
Well here I am back on a plane, only this time I am headed back to my comfort zone. Back to my family, friends, and my own bed. 
I have enjoyed my trip so much. These past 9-10 days have been incredible. I was immersed in a different culture and language from stepping off the plane last Sunday to stepping back on the plane a few short minutes ago. 
I am both happy and sad to be leaving. Happy to be reunited with familiar faces, but sad that I am leaving this beautiful country and its beautiful people that I have encountered. 
I was asked at the beginning of this trip by someone I know “How can we capture, right here, the sacredness of what you are experiencing in Haiti? I wonder… Must one travel across the oceans in order to discover what is humanly divine?” 
This question has been stuck in my head for the duration of this trip and while I am not sure if this question was rhetorical or if they wanted an answer, I feel like leaving this country, I now have time to formulate an answer. 
This week I was separated from all familiarity. I put everything that was going on in my life aside and allowed myself to be completely immersed in Haiti. In doing so, I was able to see the reality of the devastating situation in Haiti and the reality of how good I truly have it. 
So to answer this person’s question, no, I do not think you have to go to a third world country to experience what I did these past 10 days. However, I do think it is more difficult for us as Americans to experience because we live in a country that focuses solely on the individual. We worry about ourselves before others. Even on this airplane, if we are needing oxygen we are told to make sure we are okay before helping others. Helping the young child beside you before yourself would be looked at as stupidity rather than chivalrous. 
I attend University of Michigan in Flint, Michigan. As a social work student I have had the opportunity to work within my community at the soup kitchen, sorting clothes for foster children, etc. I am also able to tie in the happenings in Ferguson and other hot topics dealing with racism, gender inequality, etc throughout the United States. 
While we are discussing the reality of the United States, we are not discussing the reality of what is going on in other countries, UNLESS it directly effects us in some way. I think especially in my area of education, this is a very important thing that needs addressed, but is getting ignored. 
Now I do not fault the educators or the school for not making this a conversation in the classroom. It is an American way of life. We are solely focused on our well being, whether it be us as individuals or as a country. As long as another country’s suffering is not effecting us, we as Americans do not educate ourselves. Our government or maybe a few private organizations will hand over some money or resources, maybe send military help, but the general American population is consumed in their own lavish lifestyles.
I have witnessed the devastation of Haiti first hand. I have seen the mass grave of 300,000 people who lost their lives in the earthquake; then saw the mountains where even more people were “buried”. I saw the homes made of shipping containers on the side of the mountains where the survivors took refuge after the earthquake. In the past two years I have been to several orphanages and hospitals and met over a hundred of the millions of orphans in Haiti; whose parents were killed in one of the several natural disasters, infected with HIV/AIDS, or do not have the means to take care of them and love them so much that they want them to have a better life. These orphaned children may have special needs, whether it be physical, mental or both, and because of this, the likeliness of them being adopted is slim and they do not have adequate medical care available where they are at. 
This trip I was able to be a part of a medical clinic and saw the hundreds of people who sought out medical care for their children or themselves. Once medicine was gone, it was gone and who knows when someone will be back with it again. There was one child that was suspected of having been sexually abused and unlike the United States, where we would get right to that situation, this child will most likely continue to be abused. 
In Haiti, there are so many people without an education or a well paying job. To survive they have to stand on the streets and beg you to buy their products and who knows where those products came from. Women also sell their bodies to feed their families because without an education they don’t feel like they have another option. 
I am not saying that these things do not happen in the United States because they do and they are horrible. While we have the means to help, there is not nearly enough help in the United States. But there are really not enough advocates for these people in Haiti and in other third world countries. 
It is when you are able to be humbled and look outside what effects you or has effected you; once we educate ourselves on the outside world, it is then that each of us could experience what I do each time I go to Haiti. If we continue to stay within the bubble of our country, community, and our well being, we will never truly experience what is humanly divine. 

March 1st 2015

So I know it is not February anymore but I was not able to post the last few days due to limited wifi so I wanted to still update on my trip. 

I spent Thursday and Friday up in the mountains. The view was spectacular and being a small part in helping people get medical care was awesome. 

One thing that stuck out to me was one particular woman and her child. She had brought her child in for something and ended up having her child diagnosed was hydrocephalus. I was born with hydrocephalus so this was emotional for me to see the doctor pull this woman aside and tell her she needed to get her child to the hospital as soon as possible so her child could live a healthy life. Mind you we are in the mountains and the hospital is down in the city. These people do not have vehicles and have to walk to the hospital or get to a place that they can take a taptap ( which is basically an old pickup truck that loads people in the back).

After we spent all that time in the mountains we head down to another orphanage. We got to be reunited with kids that we saw on our last trip as well as meet some new ones<3 I once again got to practice being a mom while feeding a little girl. That might need a little more practice. There were a few children, one in particular that I wanted to pick up and bring home with me. 

I did my part in helping the Haitian economy by buying some plantain chips and ice cream. (Which were fantastic) I also got to experience Haitian driving once again seeing my life flash before my eyes several times. But here I am back at Ruuska Village. Making pancakes with the kids and spending some more quality time with them and the people who work here. 

It does not feel like I have been here a week. I am not ready to leave in a few days. I will hopefully update one more time before I leave 🙂 


February 26th 2015

I have Internet at my new home for the next couple days! I am getting a different view of Haiti. Leaving the kids for a couple of days to experience something different is nice, but I am already missing them. 

We stopped at a coffee place and ended up watching Avatar. Which was not real exciting considering I didn’t understand the language. Then we were off to our next destination, the beautiful mountains of Haiti.

We complain about Michigan roads. They are no comparison to the roads of Haiti. The ride was an adventure it itself. The view on the way up was breathtaking though.

Getting here and being able to see the work that is being done with the medical missions is awesome. I am excited to be a small part of it in the next couple of days. I have no experience with anything medical except being a patient myself so we will see what kind of jobs come my way 🙂 

I am thrilled to witness this incredible view and be involved in this incredible ministry that is helping these people receive the medical care they need.

I have been able to learn so many people’s stories on this trip and am excited to learn more. Each time coming here gives us a new experience and all new feelings emerge. I continue to be blessed by this opportunity and am so thankful.

February 25th 2015

Today we took five kids to the beach. It was gorgeous and the kids had a lot of fun. 

I had a blast too. We went to the cafe. While keeping kids seated in the cafe and making sure they didn’t play with the  knives on the tables, they did manage to spill ice and water all over me,Lol.

Most of the kids love the water. One refused to step foot in the ocean and another never shut her eyes when she went underwater so was constantly getting out to wipe her eyes. I managed to take all 5 kids to the pool and watch them for a minute before the baby needed to eat. Thank you Jesus there was a 14 year old girl among the kids who was more than willing to help out. 

Reality is, most Americans that visit Haiti see the fancy resorts and beautiful beaches but have no clue what lies beyond the gates of the beautiful vacation suites. Well let me inform you the beauty within these beautiful and grateful orphans of Haiti is something we all could learn from. Their hearts are so full of love for simple gestures most of us completely take for granted. There is no sense of entitlement that we as Americans so often expect. 

We are now on our way back to the village. Most of the kids are passed out, exhausted from this long day. If today is any indication of how good my mothering skills are, I think I could do pretty well. 

Tomorrow me and Erin are traveling up the mountain to do medical missions and will be gone for the next couple days. I am not sure if we will have Internet but I will take photos and try to update you on our days