Today is Rare Disease Day, and we here at the Steen household are overwhelmed by the love and support of our family, friends, and our community as we spread awareness about Rare Disease Day, and specifically, Joubert Syndrome.

My awesome friends and co-workers at my company, Coldwell Banker Mid-America Group, Realtors, rallied together and raised nearly $1,500 for the Joubert Syndrome and Related Disorders Foundation, and donations are STILL coming in!  PLUS, we all wore jeans to work today to celebrate rare genes!  I am truly thankful for every single person I work with, and am SO blessed to work for such a wonderful company!

In addition to work, friends and family from ALL over have been sharing pictures of their RYKER STRONG bracelets (with #takethatjoubert).  Check out some of the pics below!

Thank you ALL for your support of Rare Disease Day, your help in spreading the word about Joubert Syndrome and Rare Disease Day, and your excitement about being RYKER STRONG!  This journey would be much more difficult without each and every one of you in our lives!

February 28, 2017 is World Rare Disease Day, an international event created to help spread awareness about rare diseases and the impact they have on patients' lives.

As many of you already know, with less than 1,000 patients affected with Joubert Syndrome, Joubert Syndrome is classified as a "rare disease."  As such, we are CELEBRATING rare disease day this month and the awesome friends, accomplishments, and milestones we have reached on our rare disease journey.  With Ryker in our lives, we are SO lucky to CARE ABOUT RARE!

To help show our support for Rare Disease Day AND to spread awareness about Joubert Syndrome, we have created "Ryker Strong" bracelets, all featuring the hashtag #takethatjoubert.  The bracelets are black and white -- the colors of a zebra -- which in medicine is used to describe a very unlikely diagnostic possibility.  The words "Ryker Strong" not only help symbolize Ryker's name (which means "strength"), but they also serve as proof of the strength Ryker has to overcome many things the medical world said would be "impossible."  And the hashtag, #takethatjoubert, well, that's just our way of saying that Joubert Syndrome can't hold us back from ANYTHING!

We are spreading our free "Ryker Strong" bracelets all around, so if you would like a bracelet for yourself, please feel free to contact me here and I will send a bracelet to you!  Then, when you get your bracelet, take a picture of you wearing it -- wherever you may be -- and use the hashtag #takethatjoubert to spread awareness to others and show everyone that you too CARE ABOUT RARE!

I strongly believe many rare diseases, especially Joubert Syndrome, go undiagnosed in many families.  Parents may know their child has hypotonia, for example, but hypotonia is a symptom, not a diagnosis.  If we can spread awareness about this rare disease, it's possible we may help a family get a diagnosis to help them formulate a game plan to take on Joubert Syndrome.

We are SO excited to see these "Ryker Strong" bracelets spread all around, and we are even more excited to help spread the word about Joubert Syndrome and the multitude of other rare diseases that affect families worldwide!  Thank you for your support, and THANK YOU for caring about RARE!

A while back, my Aunt and Uncle gifted me with the book On Fire by John O'Leary.  The book shares the life story of its author, John O'Leary, who at nine years suffered severe burns over 100 percent of his body after an incident with gasoline caused an explosion and a horrible house fire.  The doctors told his family he likely wouldn't survive, but after five months in the hospital, years of rehabilitation, and countless encounters with extraordinary people (including famed Cardinal's baseball announcer, Jack Buck), John O'Leary not only survived, but he flourished!  In fact, John now says his experience -- the grueling treatments, therapies, and struggles actually changed his life for the better and, if he had to do it all over again, "he wouldn't change a thing."  It's a powerful story, and one that I recommend to all!

Now, you're probably wondering, "when did Kasey get into the business of book reviews?" I didn't.  I'm sharing this story with you because, while I was incredibly moved by John's story when I read On Fire, I was empowered by the story within the story: the story of his Mom, and her unconditional, TOUGH love -- the love that made him stronger, and who he is today.

In his book, John describes the scene at his family dinner table on the first night he was home from the hospital.  After five long months and incredible trials, his family was finally together again and his mom prepared his favorite dish: au gratin potatoes.  But, as John stared longingly at the food, he realized with his bandages, wrappings, splints, and the condition of his hands (he lost a number of fingers in the fire), he wasn't able to hold his fork.  His sister noticed his struggle, picked up his fork, and got potatoes ready to feed him, when his mom said, "Put the fork down...if John is hungry he'll feed himself."  

Wow.  How cruel, right?  What type of mother would do something like that?

Me.

That's me.

That's SO many of us as parents.

That's hard.

That's heartbreaking.

That makes us stronger.

John described his anger towards his mom in that moment -- the celebratory evening suddenly becoming contentious -- but, in the midst of his anger, he taught himself how to eat again.

As I read this account from their family dinner table, tears came to my eyes (I cried a lot when I read this book, actually, and it's not even a sad book!).  I remember sitting there and thinking, "Why are you crying, Kasey? You're being silly!"  But it was as if God was using this story to tell me, "you're doing the right thing."

You see, with Ryker, we share a LOT of love in our household, and a lot that love is TOUGH love.  Tough on Ryker, tough on us.  When he was learning to sit, due to his balance issues he would fall.  He would fall often, and he would fall hard.  I so badly wanted to catch him, I so badly wanted to cushion is fall (and we did, on many occasions), BUT I so badly wanted him to learn!  If he always had a soft landing, he would never learn the danger of falling.  So, with sadness in my heart, I would watch my little boy fall, knowing the tears would soon come.

When he was learning to crawl, we would motivate him with toys.  He would work SO hard to move a few inches, and when he FINALLY reached his toy (or, let's be real, the iPhone), what would we do? Move it further out of his reach.  When he was learning to stand, he would reach multiple times for the chair -- miss, fall, and get discouraged.  When he finally made it to the chair, he would struggle to stand, pull himself with all of his strength, and exert every effort to bring himself to standing.  I sat back, every ounce of me wanting to just give him a boost...every ounce of me wanting to help him pop right up...every ounce of me knowing I couldn't help.  If I helped him, how would he learn?

Those moments are the worst.  Particularly when Ryker looks at me as if to say, "how could you, mom?"  But, through his struggles, Ryker learns how to accomplish amazing things -- and those "worst" moments suddenly become the BEST.  Because HE works so hard -- every SINGLE day.  HE accomplishes these great feats.  HE overcomes the impossible.  HE EARNS IT.

In recounting his moment at the family dinner table, John O'Leary said the following:

How much easier it is in life to not do--or to make others do--the hard stuff.

Easier to take a picture of the family with everybody smiling at the dinner table, a little kid in a wheelchair at the end, post on Facebook, and write, "Back to normal! We're all home and doing great!"

Mom wasn't worried about what others thought.

Mom wasn't concerned about Photoshopping the  moment.

Mom utilized this moment as a reminder that others would be there to encourage, to serve, to love me.  But this was still my fight, this was still my life.  It might be ripe with challenges, but it was also my opportunity to realize that none of those obstacles would be insurmountable.

How profoundly true and powerful is that?

If you find yourself struggling in those "tough love" moments, or if, like me, you find yourself feeling consumed with guilt for not helping your child more when he or she struggles, please remember the bigger lesson you're teaching your child in those difficult moments: none of these obstacles are insurmountable.  For strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't.

Though the journey may not be easy, the reward is worth it!  

​Moms and dads out there: you've got this.