IN THE BEGINNING...

At the beginning of starting my blog I wanted to make it sorta like a diary but some of the things I wanted to share were too private or I just felt uncomfortable about posting them. But the more I thought...wasn't that the whole reason I started my blog was to get out of my comfort zone and open up a little bit more? And maybe help others along the way.

I know my situation is a bit different than others but what if another teenage girl is going through similar things? What If the least I can do is share what I am going though? To help someone else along the way. Just thinking about that makes my heart smile!

Life isn't always happy and it isn't always sad but it is alway relatable. I hope when people read my blog they find some connection to their life and what they may be experiencing right now. It is alway helpful for me to know that you are not alone and that someone out there is crying with you or laughing with you. 

-M

WHAT IS LIFE TO YOU?

I have never been a big reader but have always been a writer. I like to think of life in other ways than just life. I like to think of it something creative and more than what it really is.

A precious light that you are born with inside your soul. Waiting to be fed and nurtured. Waiting for you to see that little light and turn it into a raging fire. For you are the only one who holds the gasoline to make it burn.

Like a story book. Each day a paragraph, Each week a chapter. Think of the ups and the downs the trials and the tribulations. Think of the Lord who will one day read your story at those Golden Gates. He is going to judge and question the way you have written your story.

So think now, am I using this life to help others before myself? Am I going to turn this light inside my soul into a raging power?

-M

I AM A MUTANT?

For a while I tried to hide this and not really face the fact that this was true. I wanted it to go away and thought that if I shut it out that it would eventually disappear.

The "it" that I am referring to is a rare, genetic, progressive, neuromuscular disease called Friderich's Ataxia (FA). When I say rare I mean really rare. It affects about 1 in 50,000 people in the United States alone. It attacks many parts of the body including the muscles and nerves also motor skills, and losing the ability to do everyday activities among many other things.  It forces people into wheelchairs within a few years of being diagnosed. I was diagnosed when I was 13 but I am now starting to see signs of progression.

There is no cure and no treatment to this disease. It is important to keep yourself active in order to keep the muscles used to moving correctly.  Many people believe that things like supplements and more holistic things will slow down the progression of this disease. Scientist believe that there is a cure or a treatment on the horizon. Keeping an open mind and staying hopeful and optimistic is very important as well. Raising awareness so people know about it and are educated about this disease is crucial.

I am the person who never asks for help and I am very independent. So losing the ability to do small tasks everyday has been hard for me. I hate having a lot of attention on me or people feeling sorry for me
or having pity on me. Things like walking and going up and down the stairs is becoming very challenging for as well.

So seeing myself  and experiencing this I know now that I can't hide from this anymore because it isn't going to go away. I have to learn how to deal with this and know of many people with FA who have extremely happy and normal lives. It's just going to be hard for me to adjust to my "new" normal.

People take for granted the very simple tasks in life and I was one of those people. Because it can be taken away from you in a split second. I know that the Lord has a plan for me and I have complete faith in Him that He knows the greater plan.

I feel that it is time for me to be open and share this because it is going to be a big part in my life and I know that it is going to change my life for the better.

To find out more about FA please visit https://www.curefa.org/

-M

ANYTHING IS NEVER NOTHING

I have figured out a lot of things over the past few weeks. I have been told a lot of things and I have been given a lot of advice but still it is hard for me to understand the purpose of this event.

When someone who you thought was important and you thought cared about you decides to leave and walk away it is only human nature to question yourself and wonder if you caused it. But as I question myself and wonder what I did wrong nothing comes to mind. I can't blame myself for what has happened and can only grow from this experience. 

Experience- knowledge or wisdom that is gained from what one have observed or encountered.

Over the course of a few weeks I kept telling myself it was a waste and it was all for nothing but even though it may have been a hurtful or sad experience, anything is never nothing. You can always learn something from every experience. You will gain wisdom and knowledge. Ask yourself the next time you are going through tough times or if you are going through them right now. What is something that I can learn from this? What is something I can gain?

The thing that I learned is that people will come and go for reasons that you may not know but stay true to who you are and learn from ALL experiences.

-M