Dwarfism Awareness Post # 6 – Saul Wilson Syndrome is caused by a genetic mutation. SWS is a dominant gene and is not something I inherited from either of my parents. That is something that we only recently learned once doctors found the gene.
I love this quote because it explains exactly why I am who I am. No matter what I go through in life I always try to stay positive and keep a smile on my face. I always try and laugh and be happy.
But there have been times that what the world saw was me happy, laughing and always smiling but inside I was struggling more and more. When I was facing a lot of medical problems the Monica that the world saw was a completely different one than how I was feeling. Inside I was struggling to hold on and struggling to live life. Life has tried to know me down many many times but I always manage to keep fighting and get through the battles I face.
I was diagnosed with Saul Wilson Syndrome around the age 4 or 5. When I was diagnosed it wasn’t called Saul Wilson Syndrome it was referred to as the more medical terminology, Osteodysplastic Microcephalic Dysplasia.
Back then all we had was the name. Doctors couldn’t tell me what would be expected of my life. They didn’t know what I would face and I would have to deal with each challenge as they came. That made for a rough childhood as I faced many surgeries and even more doctors appointments. But I grew up with an amazing family support system that got me through it all.
Wow it’s been 6 years today that I had my right hip surgery.
This was the first surgery that I had gone in a week prior expecting to have surgery and woke up only to learn the doctors had to delay. It was a rough day when I woke up to find a nurse standing by my bedside scared to tell me the truth about the delay. I woke up and remember seeing the clock and the time on it wasn’t very long since I had gone under. I looked at the nurse and asking him “I didn’t have surgery did I?” To which his eyes got big and he said “let me go get your family.”
Upon waking up I could just tell that I didn’t wake up to a new hip. When I realized they couldn’t do surgery I became very emotional. I broke down and cried. I couldn’t help it I had been in pain for so long and endured several setbacks and now this one. I had been delayed several times due to bloodwork and other factors. So when I woke up on October 2, (6 years ago today) and realized surgery had been a success, I was so relieved!
I felt so good in fact that when they wheeled me into my hospital room I looked at my aunt and told her “are you going to get my Olive Garden now?” I was so hungry. And this was the picture she took of me.
October is National Dwarfism Awareness month. All month long I will be posting facts about dwarfism or stories about my life. I also share posts on Facebook and if anyone is interested in following me on Facebook my Blog Page is http://www.facebook.com/LittlePerson123
I would greatly appreciate your support.
October 1st post:
There are over 300 types of dwarfism and the type I have is called Saul Wilson Syndrome and it’s a very rare dwarfism. There are now believed to be 17 people who have been diagnosed with my dwarfism. I am the oldest female.
I am 31 years old and I grew up not having answers about my dwarfism. My mom, aunt and I would go to Little People of America conventions and talk with doctors or others in hopes that they could help me. I started going to the conventions when I was about 4 or 5 and it wasn’t until I was in my twenties that I found a doctor who was willing to help me in my search for answers.
Seven years ago this month I started writing this blog. On September 18, 2012 this blog became official.
That was the year that I offered up my DNA to Dr. Andrew Jackson, from Scotland, the only doctor to ever come up to me at a convention and say “you have Saul Wilson Syndrome.” To which I replied “you know about my dwarfism.” Dr. Jackson had in fact heard about Saul Wilson Syndrome but only because he had read the very few medical articles that had been written at that time.
Now to paint a picture here this was a great shock to me, my mom and my aunt because at that time there were only two medical articles that had been written about SWS and I was in one of those articles. The other one was the original. For someone to have actually read those two articles and have an interest in learning more…was a miracle to me.
For years I had gone to these conventions and no doctor had ever had such an interest or even had heard about SWS. This was the turning point for Saul Wilson Syndrome and this was where it all started.
A doctor willing to help and me with the determination to get answers. I had the dwarfism he had the knowledge to help. It was at this point that my aunt told me “you need to start your blog.”
Now seven years later and we know the gene that causes SWS and we now have 14 confirmed diagnosis.
When I look back on these last seven years it truly amazes me at how much we have learned. Seven years ago I would type Saul Wilson Syndrome into google and the only thing you could find was the two articles written in the 90s.
Now you type Saul Wilson Syndrome into google and my blog comes up, the recent studies that have been done come up, the original articles come up. Finally the research and information is out there for others to find. That is truly a blessing. Finally answers!
When I was a teenager and realized my gift for writing, I hoped one day I would write a book and share my story. That thought was always in the back of my mind but I honestly never thought that I would chase that dream. To me it was “a nice thought to have”.
But as I’ve grown older that dream has never left my mind and it was always nice to think about “maybe one day”. That time seems to be now where I need to truly focus on that goal but as I think about my story and all I’ve been through I can’t help but wonder “Am I ready for the world to hear my secrets?”
When I was approached about the documentary that was made on me I was truly happy that they wanted to share my story with the world and I am so glad that I took that opportunity to do so. I remember when I got the text on Facebook asking if I’d be willing to have them make the documentary. Of course I was excited and couldn’t believe that the time had come for me to be able to share my story with the world. My next thought was “will my mom be ok with me doing this documentary?” because I grew up in a family that was very private about things. So here I was being asked to do a documentary that I knew would be seen around the world.
By agreeing to do this, my life would no longer be private. Reliving my past and the surgeries and the doctors has always been hard for me. That is a pain that I don’t know if I will ever heal from. That is a pain I’ve hidden my entire life. When I am seen crying in that video clip that is a side of me that even my family and some of my closest friends had never seen.
And I have a dream to write a book that would only put out more of my hidden secrets and pain I’ve felt in my lifetime. Does that make me brave? Maybe. Does that make me scared? Definitely. Does it make me want to forget that dream and not make my story more public? Definitely. But would it help me heal? I think so.
I texted a friend tonight and said “I don’t know if I believe in myself” and I say that because a part of me feels as though I can’t put myself out there even more than I have. I don’t know if I have the courage to fulfill my dream. But then there is this other part of me that thinks about all the potential that I have to do what I love.
There is something I have noticed about myself. I’ve noticed that when it comes to me telling people about my life and what I’ve gone through and surgeries I’ve had and everything I’ve overcame. I have this sense of pride when I talk about all of that. When I am sitting in front of a group of people and telling them how I’ve overcome so many obstacles and how I have always wanted to share my story. In that moment I am happy and in that moment I know that I am inspiring people and that makes me feel good about who I am as a person.
And so then I realize that I have to figure out a way to overcome my fear of chasing what seems to be an impossible dream.
I have been thinking about this post for a while now and wasn’t quite sure if I wanted to write it or how to even express what I am about to say. But thinking it over for a while here it is…
My life has become about pain control. I no longer have days where I can fight against that battle any more. I sometimes feel as though the people around me cannot understand when I try to talk to them about it. When I need to talk about it. However, it’s not fair of me to expect them to understand it either.
With that being said yes my life is about pain control. I live with aches and pains every day (and when I think about it I know some of you reading this will say “we all do”). But the aches and pains I am referring to are the the fact that sometimes it take me days to recover from “a good day”. Most days I am going about trying to live the every day life of a 31 year old all the while thinking how much I will pay for it later.
Being 31 years old and feeling this way makes me feel weak as a person. In my mind I should NOT be feeling this way. I should not be having to rest more than I am able to do every day functions but I do have to think that way and it is extremely difficult for me to accept that sometimes. All I want is to be able to go out and have a good time with friends and not have to worry about how the next few days I’ll have to recover from that.
My friend told me today “you have to think about all that your body has been through”. And when my friend said that I sat there reading that text and thinking “omgosh she’s right”.
Think about all my body has been through. Such a simple sentence that makes so much sense. My body has been through 18 surgeries. It has been through 18 recoveries. It has been through years of pain and years of healing. It has been through all those years of mental and physical distress that comes along with dealing with all that, and I dealt with it all in silence.
No wonder things seem so messed up for me right now. For the first time in my life I have stopped to take care of me. And since I’ve never fully understood how to do that, I don’t really know how to. I’ve only been working at this for a few months now and its going to take longer than a few months.
So I am slowly learning how to be a 31 year old who lives a life that is all about pain control. Living this kind of life may mean that I have to miss out on some things or decline invitations to some things if I am too tired. That is such a difficult thing for me to cope with at times because I feel as though I am missing out on life. So welcome to my new normal!
These last few years have felt like a whirlwind of emotions. I’ve felt lost. I’ve felt confused. I’ve felt betrayed. I’ve felt sadness. I’ve felt joy. I’ve felt great happiness. I think these last few years were very trying for me. I faced a lot of things that should have broke me but they didn’t and because I overcame those battles I finally feel as though I can live life much better.
I have finally reached a point in my life where things are good and I am at peace. My story has now reached thousands (if not millions) of people worldwide. By sharing my story I have been able to let go of my past. The past filled with much unknowns. The haunting past of everything I’ve been through medically and the emotional toll it took on me. That is the MAIN thing- “the emotional toll it took on me”. I grew up not dealing with my emotions the way I should have. So when I got the chance to finally speak my truth it was such a relief. In the documentary that was done I say “I didn’t think I would make it thirty.” That statement was something that I hadn’t said out loud like that. That statement is something I didn’t admit to my family.
For me it was my silent truth. My silent truth that I finally let out into the world with that documentary. When people see me become so emotional in that video its because that was when it finally set me free. In that very moment I was speaking my honest truth. My truth is now shared with the world. In that moment it was as though I was free from the past that had been holding me back.
I couldn’t have reached this point in my life without the loving support of my family and friends. They say family is forever and I’ve been blessed with a family that has ALWAYS been my support system. I’ve had friends who have helped me out so much and have stood by my side through everything I’ve battled.
I’ve struggled with my emotions and opening up to friends in the past. Sometimes I would shut down because I didn’t want to be a burden to my friends. Or I’d shut down because I didn’t have the words to express what I was feeling or needing to admit. The friends I have today have never given up on me. They have stood by my side when I was silently in pain. They have stood by my side when I didn’t have the words to explain what I needed to say. They stood by me when I was facing all these emotions at once and they would reassure me things were going to be ok. Or they would reassure me I would get through it and they’d be there right by my side as I did. And they have been.