Family Traditions

The last several years haven’t been easy for me.  Many people don’t know it either.  In the last 16 months so much has happened and I haven’t worked on processing it all and moving past it all.  But I know the time is now and that I need to, my best form of therapy has always been writing so I know I need to get back to that.

Sixteen months ago dad passed away.  The weeks leading up to that we kind of knew it was coming, but it’s still hard to imagine that he’s truly gone.  Even though dad is gone, he lives on through our family.  We have come together and become closer than we ever have.  We started having Sunday family dinners every single Sunday.  Sundays are the days for family and we are showing my nieces and nephews the importance of that.

The farm we live on is now a place where our family gathers and we are trying to teach the kids the value of family traditions and farm life.  Dad may be gone, but he will always live on throughout the farm and its our job as his children to show the next generation that same thing.  I know he is looking down and proud to see all of us come together as a family and make it work.

I think of dad every single day and miss him.  When he passed away it didn’t seem real, it still doesn’t.  It has taken me this long to truly process it all and say goodbye.  My dad was a very private person, so I don’t talk about him much.  I know he’s looking down and he’s proud of every single one of his kids and grandkids.

I am my fathers daughter, I too don’t talk much about how I feel and I too keep to myself.  Growing up with the many medical things I endured I never knew how to talk about what I was thinking or feeling because I knew I had to stay strong, that was something that I never grew out of but recently I’ve learned that I can’t keep holding back.

I’ve got to do whats best for me and I’ve got to do what makes me happy.  Writing makes me happy.  For years I’ve been scared to write exactly how I feel because I was so use to keeping everything in.  I think its time that I start about my life the way I always hoped I would.  It’s going to take some time, but I think I’m ready!

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Talking With The Doctors

After that first phone call the next few weeks I spoke a few more times with the doctors.  They told me again the same information as before, but I didn’t care, I waited my whole life to hear what they were telling me and I would listen as many times as they wanted to tell me.  I think that’s mainly because the first time I talked with them it all felt like a dream and it took a few times talking to the doctors for me to realize “ok yes this is really happening”.

The first time we had a group discussion with me, the assistant and a few of the doctors as they talked to me, I kept telling them “if you need anything from me, I’m 100% in!”.  The doctors explained about tests that they would like to do and that they’d like to talk with me and get more information from me, I kept saying “ok I’ll do it, I’m in”.  At one point they told me to think about it, to which my response was “I’ve had 29 years of thinking about it and I always said that if this ever happened I would do whatever I could do to help, so I’m all in!”.

After talking with the doctors and discussing my medical history, most of which they knew of from this blog, I realized something, I know my medical history like its the back of my hand.  I’ve grown up “studying” my life, I tried to absorb as much information regarding my surgeries and what doctors have told me, so when these doctors asked me questions, I started to realize at just how quickly and how much information had been absorbed.  They seemed pretty impressed too that I didn’t have to consult my medical records that much, some things I did, but for the major things, I would tell them “yes that happened” or “yes I have that”.  I know its my life, and of course I should know all of this information, but it was as they were talking to me that I realized just how into it I was to confirm everything, to finally have someone or something to compare my life too.  It was an amazing feeling to finally have that opportunity to start to share all of this with others.

Since having started this process with the doctors, I have learned that not only have the doctors been reading my blog to learn more, but also these other families have found my blog and have been reading my posts.

Finally my blog has become the platform that I hoped it would, this is just the beginning to a very exciting adventure!

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The Day I Had Waited My Whole Life For

In August of 2017 I got a phone call from a group of doctors who have been working to help me find out more answers.  When I returned the phone call and listened to what the doctor started to tell me it was very surreal.  I had been waiting my whole life for that phone call, and if I’m being honest, I never thought I’d live to see the day that that call came in.

I am 29 years old and I’ve searched my whole life to find others out there with the same dwarfism as I have.  That was the soul purpose for me to start writing this blog.  I wanted this blog to be the starting point of the conversation.  I wanted this blog to connect the dots one day, and that day was August 11, 2017.

I was standing in my kitchen with my mom and my best friend.  I switched the phone over to speaker phone so they could hear too what the doctor’s assistant was telling me.  As she started to talk she said the words we had waited years to hear, “we have found 8 others with your dwarfism”.  The assistant went on to tell me just how they found all these other families and how this had all started only about a week prior to the phone call.

As I stood there in shock and listened as she explained everything, it felt like a dream.  My fight that I’ve been fighting my whole life, was starting to come together and answers were starting to be answered.

It was truly the miracle that I never thought I’d see in my lifetime.

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I’m Writing So Others Can Learn

When I first started writing this blog, I did so because I was tired of googling “Saul Wilson Syndrome” and finding nothing.  I’d type that into google (that or the more technical term Osteodysplastic Microcephalic Dysplasia) and I’d scroll throughout google with hopes of finding something, anything…but there wasn’t anything out there.  The only thing I’d find is a medical journal that my doctor wrote when I was a baby.

I remember when my mom, my aunt and I first started talking about me writing a blog.  We were in Dallas, TX at the national LPA convention.  I had just met a doctor from Scotland who had actually heard of my dwarfism, which had never happened before!

I remember we were at the mall and I can recall riding down the escalators as mom, my aunt and I all started talking about what the doctor had told us about being interested in helping me.  It was all so exciting and new and as we all walked around the mall talking about it we had no idea that just a few years later, 5 years to be exact, the doctors would learn even more information!

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When You Have No Answers

Something that many people have asked me is in regards to how my family knew what to do when it came to my medical life and surgeries.  Well, the truth is we didn’t know.  With every surgery I faced, we had to find doctors willing to help me.  Not a lot of doctors are willing to take my case, because there is a lot of unknowns, and I understand that.

There have been risks with probably every single surgery I’ve had.  But lucky for me, I have found doctors that weren’t scared to take on the challenge.  As a patient, we have to be understanding too because we have to know that “it’s ok if the doctors don’t have all the answers, as long as they are willing to help us the best they can then I will trust them”.

As a parent it can be frustrating when you have a child with a syndrome and there is not answers out there, trust me I know this all too well.  I’ve heard about it many times from my parents and I too have held these same frustrations.

I can’t lie and say its easy, because it isn’t.  I’ve had my fair share of struggles with this in life.  But I am a survivor and I like to believe that part of my syndrome includes a fighting spirit.  No matter what I’ve endured, while sometimes it may get me down, I am a natural born survivor and I have a been blessed with a very positive attitude in life that helps me get through anything and everything I face.

I just want parents out there to know that you are doing a great job with you children and you know whats best for them.  I know its hard not having all the answers, my parents have been there too.  We were faced with the question of “is this whats best for my child?”, bu the thing was, the question wasn’t really “is this whats best for my child?” but it was “this is the only option we have, so this is what we have to do.”

And guess what, it worked!

I am a successful 29 year old.  I graduated college with a Bachelors Degree and I also have an Associates Degree in Arts.  I work full time as an Assistant Manager, where I love what I do and I thrive in my career.  I have friends that I go and hang out with.  I have a family who has always supported me in whatever I want in life.  I am a writer, and I own this blog.  I am where I am today because my parents pushed me to become the person they always knew I could be, they never gave me limits, instead they pushed me to break barriers.  And now I am able to do what I’ve always known I was meant to do, teach others.

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Figuring Life Out

The last several years have been a roller coaster of events.  Since 2010 life has just seemed like its been one thing after another.  Since 2010 I’ve had 2 shoulder replacements and 1 hip replacement.  I was finishing up college and trying to find out what I wanted to do in life.  I was trying to find out what career I wanted.  I started to focus on my life and where I was wanting it to go and what I wanted from life.

But I quickly became stuck in this pattern.  I realize now I wasn’t exactly living so much as I was just going through the movements of each day.

Over the last year and a half I really started to lose focus of things.

I lost my dad a little over a year ago and that was hard.  It has taken me this long to heal from that loss, but I am working on that now.

Last year I lost my grandmother too.  She was a great lady who I loved dearly.

I am hoping to start writing more freely with this blog (or at least with some things) because writing has always been my best form of therapy and one day I really do hope my story is out there for others to read…the whole story that is, so far I’ve picked and chosen what I want said.

I don’t know if its this new year, new attitude kind of thing or what but I haven’t been actually living life for a long time now and it is time I need to get things back on track.


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Left Shoulder Update

I went in November to see how my left shoulder has done over the past 6 months.

I got good news!  The doctor said that the X-Rays showed no changes over the last six months since I had had my last check up.  So unless I have more pain or something happens, I was cleared for a year!

When I use the shoulder its all about pain control.  While I limited the use of it drastically, I still try and use it best I can.  I have learned new ways to adapt to things and maneuver the ways I perform tasks such as lifting things or even going to reach for something.

The only times I can really tell that I am limited in the use of it is when I go to outreach for something.  The most common example of when this happens is when I am at work and I am running the register and I go to hand someone back change.

While I know the customers have no idea just how much of a struggle it is for me to outreach the money to them, every single time I go to do so I notice the limited motion my arm has.

There isn’t a single time that I go to do this that I do not notice this limitation, but I make do with what I can because the alternative is not having the shoulder and function of that shoulder at all.  So for now I hold off on the surgery until absolutely necessary and that can be years from now or it it could be months, but I won’t let it stop me from doing what needs to be done now.

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Left shoulder update

November is finally here!!  I’ve been waiting because at the end of this month I go for an update on my left shoulder and I find out if the replacement is still doing ok, or if I will need to plan for surgery so they can take the replacement out completely.

It’s been six months since the last update and at that time it had already gotten worse from the previous check up.

I am nervous about what the doctor will tell me, but I’ve also known for a year that the replacement is failing.  For the last year it’s been about pain control and while it doesn’t hurt as bad as it was a year ago I can tell its growing weaker and trying to hold my arm up and use it, the little bit that I do, causes it to grow tired.

I know it’s just a matter of time and in 3 weeks I will know just how much time I have left.

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Research for Saul Wilson Syndrome

Three weeks ago I went to the National Institute of Health to help with research for Saul Wilson Syndrome.

I was there for a week and they ran many tests to learn more and to help me learn more about my health.  I was able to find out that I am healthy and for the first time in my life I feel confident in regards to my next several years.

Next year I turn 30 and I will be entering into my thirties with a good understanding of my health, that is something I’ve never been able to say before.

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New slideshow pictures

Hello everyone, I’ve been working tonight to add more pictures to my slideshow so check out the new pictures and thank you to everyone who follows the blog.

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