Keep On, Keeping On!

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His motto has always been…” Keep On, Keeping On!”  And that is exactly what he always does.  At the young age of 27, his accomplishments are many.  He was the high school prom king his senior year.  He was recognized as an honorary captain of his school’s football team.  The high school basketball coach appointed this young man as his special advisor. And because of his impact in these sports, a local news station decided to recognize his efforts with an interview of him.  In the city in which he lives, he was asked to lead a local University football team onto the field for one of their games.  For a minor league baseball team, he led the traditional “Take Me Out to the Ballgame” song with the crowd.  He also spent time volunteering at a local elementary school, playing games with the children, and exercising with them.  He has many friends and even knows some celebrities, such as Brad Paisley, who likes to refer to him as a “Packer Backer” because of his love for Green Bay.  His accomplishments really are many, and he did all of this in such a short amount of time. 

But that is not the interesting part of his story.  Instead, it is how he is living while still accomplishing all of this.  As you learn this part of his story, I am certain you won’t believe what you are about to hear.  And you will then understand what it really means to just “Keep On, Keeping On”…

Over 27 years ago, when this boy’s mom learned that she was pregnant, she couldn’t have been more excited!   And as her pregnancy progressed, she and her husband learned something even better – They were expecting TWINS!!  It was an easy pregnancy with no complications.  She even carried to term and had to be induced at 40 weeks. Apparently, those little ones weren’t in a hurry to be born.  As the delivery progressed, she was even able to deliver them naturally.  A tiny, little boy came first, and it was easily love at first sight!  And then exactly 8 minutes later, a little girl also entered this world!  Two perfect little miracles!  It was really the perfect end to a perfect pregnancy.  A true blessing for anyone who knows what it’s like to carry multiple babies at once.

But by 18 months old, it was becoming more and more clear that not everything was as perfect as these parents once predicted…

By now these little loves were starting to move, and this boy’s parents noticed that his ability to walk was much different than his twin sister was experiencing.  He was clumsy to say the least.  His dad best described him as a “drunken sailor” when he walked, often hitting walls and doors as he passed by them.  The little boy also was super unsteady even in a sitting position, and he often drooled more than his sister.  So that is when the testing and analyzing began.  When this young boy turned 4 years old, his doctor finally had a diagnosis — Ataxia Telangiectasia (or better known as “AT”).  This is a very rare disease occurring in only 1 out of every 40,000 to 100,000 people.  Its victims over time will not only lose muscle control but will also lose the ability to do most things like walking, eating, and dressing on their own.  And unfortunately, the saddest statistic of this disease is that it claims the lives of its victims on average by the age of 20.

It was a devastating diagnosis to say the least, and his parents knew that life wouldn’t ever feel “perfect” again, especially as this young boy continued to grow and develop.  He would forever have challenges and obstacles to overcome.  How would he possibly be able to handle all of this for the rest of his life?

But we all know how he handled this.  His accomplishments are so many at such a young age.  So, the real question:  How did he handle all of this?  How did he learn to accept his diagnosis and to continue to make a huge impact in this world?

Put yourself in his shoes — What would you choose to do if this was your destiny?  Or what if it was something else?  What if life throws something difficult your way?  How do you choose to handle it?  Do you give up and accept fate?  Is it sometimes easier for you to just walk away from it all?  Do you lose all hope and faith during these moments in your life?

If so, then it is time to learn a lesson from this incredible young man.  It’s time to find out how he still moved on to achieve amazing things despite his lack of muscle control, despite his inability to walk by himself, and despite his inability to live a “normal” life that he was so keenly aware of as a first grader.  He already knew at that point that he would never live a life like the rest of the children who surrounded him, but he still finds a way to live a great life anyway.

Now after talking to him, if you were to ask me his secret, I would tell you that he has an unbelievable personality.  And it’s the type of personality that people flock to. They all so easily love him!  He also is compassionate to everyone in his life.  He feels sorry for their difficulties while never focusing on his own.  He especially loves to tease and have fun whenever he can!  And he also works hard each and every day to stay happy.  He focuses on the good, even when some of his days feel sad.  He focuses on all of the things he is grateful for, instead of the things he is missing out on.

But this young man would tell you something a little different when he shares his secret of how he achieved so much in such a short amount of time…

He will tell you about his strong determination to never give up…to never quit.  He will also say that he has chosen to never stop having fun along the way.  Life’s too short to not have fun!  But mostly, he shares that his strong Christian faith is truly what means the most to him.  He has accepted that God made him this way for a reason.  And because of that, he will be the best person he can be for as long as he is allowed.  And then he shared some words with me that I will never forget.  He looked at me and simply said this,

”When it’s time for me to go home (to the Lord), then it’s time for me to go home.  It’s all in God’s timing.”  

And whenever that will be…well…it will just be.  Because he knows that when that time is here, he will have an eternity to do all the fun things he missed out on in this life…like playing all of his favorite sports and being able to easily run around as much as he wants to.  

So at the age of 27, this boy sure has accomplished more than he ever could have dreamed of.  He defied so many odds with this rare condition, and he still continues to push through to be the best version of himself.  So as you live out your life, and difficult things come your way (because we know they will), I hope you will be inspired by this young man and choose to live the way that he does.  To choose determination, positivity, and fun as often as you can.  

Because he already knows, at this young age, that his time on this earth is shorter than what he would like it to be.  But instead of focusing on that, instead of succumbing to his disease, instead of laying down and letting life just pass him by, he chooses instead to do something different.  He chooses to always find a way to live by his motto.  This motto of “Never Giving up!” and most importantly to “Keep On, Keeping On!”

As I wrapped up my interview with this young man, his mom decided to share one more story with me. As she spoke those next words, I looked over and saw tears streaming down his face.  It was a story about his twin sister and what she too had to overcome due to his illness.  Stay tuned next week for Part II of this series and hear another incredible story about his twin sister!

Xoxo

Marsha

*For those of you struggling with something in life or have a topic of interest that you want me to talk about in this blog, email me at BeYourBestSelfBlog@gmail.com.  Let’s work together to Be Our Best Selves!

Photo Credit   Photo by Marcus Aurelius: https://www.pexels.com/photo/photo-of-person-using-wheelchair-4064339/