My Unique Life

Today my mom found some of my old glasses from when I was a kid and I sure don’t miss these!

At ages 2 and 4 I had cataract surgeries and growing up I didn’t have lenses on my eyes and wore bifocal glasses which were really thick.

It wasn’t until I was 25 years old that technological advances improved so much that doctors were able to give me lens implant surgery which let me say goodbye to glasses, all except for when I drive. After over twenty years I got my eyesight back without the use of glasses!

Two years ago I got a call that I wasn’t sure I’d ever get in my lifetime. The call was from the doctors at the National Institute of Health telling me how they found the gene that causes my dwarfism.

Getting that call was such a big deal to me because it meant that what I set out to do years prior, by being the first person to enter my DNA into the database, had finally paid off. It meant me starting my blog, because there was NOTHING else on the internet at that time that talked about my dwarfism. It meant me sharing my life with the world, in hopes that one day it would mean something.

When I think back to when we were at the hospital and I was doing the tests. I remember laying in the hospital bed as we retold my life to the doctors and I remember thinking “Wow, I was blessed with an amazing support system growing up.”

I had a mom and dad who taught me so much including the value of hard work, never giving up, and fighting for what you believe in. I had four siblings who treated me like their little sister not like someone who “was different.” I had grandparents, aunts, uncles and cousins who all watched out for me and who advocated for me. Friends who have supported me. I had an AMAZING support system and I still do.

So “my reason why” is because I am here to inspire people, to help brighten their day, to advocate for my dwarfism and to share with the world my story.

I have dealt with a lot in my life and I grew up not dealing with it properly.

I grew up with the “just deal with it” attitude. When I had to go to doctors all the time, I just dealt with it. When I had to have surgeries instead of having fun with friends, I just dealt with it. When I was facing serious life situations and felt no one would understand, so I kept it all inside, I just dealt with it.

But the thing is, I wasn’t dealing with it. I was just suppressing feelings (for pretty much my entire life). So what happened? I reached the point in my life where it was time for me to heal. It was time for me to let go of the past and everything that it held.

I have never regretted anything that I have been through. During my childhood I dealt with a lot of surgeries and even more unknowns. I fought like hell to get to where I am today. But most of the time I wasn’t fighting for me. I was fighting for my dwarfism and for the others, even though I hadn’t met them yet. I was fighting for their future, not necessarily mine.

Next year the little people conference is in Baltimore, Maryland and I am already planning to go. Not only am I planning to go I am advocating (and hoping) to get many of the other families with Saul Wilson Syndrome to attend. My goal is to get as many families together as I can and this will be the first time that all of us will be together as a group!

When I first found the Primordial group there were only a few families to start off. The group was so small, that our first meeting was in a single hotel room. I remember meeting with these other families (and while I was in my early twenties) it was the first time I felt like a part of the little people group. They made us feel welcome and I am so grateful to have found them as it helped lead me to where we are today with the research and I have met many friends in that group.

That is my goal with the families of Saul Wilson, I want them to be able to have that support system. It truly is a great thing to have other families to talk with and share stories and be able to meet with at conventions and meet friends.

It has been almost seven months since I retired from my job.

Most people thought that by now I would be asking for my old job back. The decision for me to stop working and take care of my body was NOT a decision I took likely. It took me about two years of back and forth in my mind, asking myself “What should I do?”

The thing is I am thirty-one years old and I have lived my entire life overcoming surgeries and dealing with a body that ages faster than I do. It would be great if I was the average thirty-one year old, but I am not.

I’ve had both shoulders replaced, a right hip replacement and several other surgeries. But when doctors told me that they wouldn’t be able to fix my left shoulder after the replacement failed, that was the beginning of a wake up call to me. A wake up call that happened two years ago, but I was too stubborn to face it at that time.

Now I have people asking me “What are you doing with your life?” and when people ask me that it gets to me every time because for me that just lets me know that they don’t truly understand my decision.

“What am I doing with my life?” I am living it. For the first time in my life I am out of school and I am not facing yet another surgery. For the first time in my life I am not working my life away. For the first time in my life I can spend time with family and not worry about being too drained of energy to take my nieces and nephews out somewhere. I can read more books. I can stay home and play with my youngest niece and watch her grow and not worry about how exhausted I will be later.

But also, right now I can focus on my writing. It has been years since I have been able to feel the creativity of writing and slowly I have been able to get back to that. I was so clouded by pain and exhaustion that the one thing I knew I was great at- writing- I was no longer doing.

So for now I am living so that I can have more stories to tell. The stories that I have written in the past carry a lot of pain and sadness. It has taken me my whole life to get to the point of letting go of those stories. Now it’s time for me to write my happy ending.

This is a post that will be hard for me to write but I’m suppose to share my story right? Well if I ever have hopes of publishing my book then I’m going to have to get use to admitting to some hard truths. So I guess I’ll start now.

For a long time I felt as though I was faking happiness. I was at a point where I was as happy as I was going to get but knew I wasn’t fulfilled in life.

I have dealt with depression many times over the course of my life. When I was younger and facing it I didn’t know that is what it was but now that I am older and have learned about it, I know I did in fact suffer from it. And yes I use the word suffer because looking back now I truly was suffering. The depression stemmed from all the things I dealt with growing up, but I thought “hey this must be normal because who else wouldn’t feel this much sadness after dealing with what I’ve been through.” For me the sadness was PERFECTLY NORMAL, which is ironic for me since NOTHING in my life seems to be normal.

I still have times in my life when I face the sad times but I try really hard to not get as low as I have been in the past.

The lowest point I have ever been was when I was in eighth grade. At that time I was preparing for a major surgery- my spine fusion. I was eleven years old and facing a life or death surgery. That year I hit my rock bottom, which how many eleven year old knows about a rock bottom? Well I did. I was at such a low point and I couldn’t tell anyone. I was scared, but felt like I had to hide my worries. I remember thinking “if I make it through this, I will never let myself get this low again” and I didn’t get that low again for many years. Yes I would face depression, but nothing like that year.

Sometimes life calls for a big change and this year was that change for me. I had to break the cycle because I was afraid if I didn’t, who knows where I might have ended up.

So I may not know what to expect in the future, but I am happy and that is all I need right now. The best medicine I’ve found is being surrounded by family and friends and by learning new things. By going on adventures and stepping outside of your comfort zone- something I am definitely not use to but I am learning.

This year feels as though everything has changed. It is such a weird feeling when you start off the year just knowing that things would be different when you ended the year. But I didn’t know just how much would change.

So like anyone who is scared of change…I started off with something small. I bought a new car! Okay so that’s not really a small change, for me that was a big change. I went from a 2000 Ford Focus to a 2019 Toyota Corolla. Nineteen years of advanced car technology and 11 months later, I’m still learning how to use some of the features in my car.

For me this car represented change and a new chapter in life.

This year has represented a closing of one chapter and on to opening up the next one. I don’t exactly know what the next chapters of life hold- which is why I call it “Blank Chapter.”

I started off this year with a quote “New Year, New Beginnings, New Chapters.” As every year has passed before I got to a point where I felt as though I was living the same days over and over. Life felt like it was on repeat and I felt as though I was missing out on a lot of life.

For years, work was my life and there was a time when I truly enjoyed working my life away. But this year began and I had a “what the heck am I doing?” moment where I realized I was missing out on being with family and friends. I was missing a really big part of my life.

I realized that when I was younger and thought about my future, the very few times I did dream about my future, I didn’t want to be the person who worked their life away. I remember when I was younger and when I would write, I would think “as long as I’m happy, then that’s all that matters.”

It is writing that truly makes me happy. However I am still working on opening up more as that is something I am not use to. I am not use to sharing how I feel and opening up about my life.

So ideally writing a blog and “sharing my story” is extremely hard to do when I’m use to keeping everything inside.

There is a quote that says “Life is 10% what happens to you and 90% how you react to it.”

I love this quote because it makes me think about how people say I have such a positive attitude and how I’m always laughing.

For me if I let everything that I’ve been through get to me then I would probably be a very negative person. My parents instilled in me the “it is what it is attitude” meaning that growing up I knew that facing surgeries and the unknown was my normal. I knew that I had to face things in life that no other child my age would face. I knew I would go to school and the kids wouldn’t understand about all my challenges and some wouldn’t know how to talk with me about them and I learned to be ok with that. As an adult that has been something I’ve struggled with to overcome. Letting people know the real me.

Life is definitely a journey and none of us know what will become of each day. I learned to live for the now because the later wasn’t guaranteed and I learned that at a very young age. I always felt as though I grew up at a lot younger age than most people because I was facing so many grown up decisions at a very young age.

So enjoy the 10 percent of what happens to you and don’t let that 90% tear you down. I did a few times and I’ve learned so much from it.

Most little people face surgeries during their lifetime. For me I have had 18 surgeries. I was born with clubbed feet (meaning my feet were upside down and backwards when I was born) and I had many surgeries during my childhood to correct them. I’ve had cataract surgeries with both eyes, lens implant surgeries, several sets of tubes put in my ears, a tethered chord released, a spine fusion, gum grafting surgeries, both shoulders replaced and a right hip replacement.

For anyone surgeries can be complicated but for little people, because of our size, there can be even more complications. Anesthesia can be very complicated for little people because we have a smaller airwave to work with. I have been lucky to have only one surgery where they couldn’t intubate me, my right hip replacement (the first attempt). I woke up from that attempt and knew I had not had the surgery yet. It was such a weird feeling waking up and just knowing something had gone wrong.

Little people hold many different professions. We are lawyers, doctors, teachers, managers, actors, and so many other professions.

We may have to do the job a little bit differently but we can do the job.