I started this blog 8 years ago, encouraged by a friend to share our journey.  I was hesitant at first.  Life at our house isn’t pretty.  It’s often chaotic, confusing and challenging.  It’s loud and smelly and all consuming.

Why share that with the world?

Once I started writing, I couldn’t stop.  Writing it all down as it unfolded became my way of escape.  If I wrote about it, I could release it.  Capturing all the heartache and struggle; embracing it for what it is, then letting it go became my therapy.

It’s taken me all these years to realize however, NONE of this is about me!

Like an Oprah Winfrey ‘aha’ moment, I finally get it!  It’s NOT about me!

I’m just the mom.  I’m the one who gets a front row seat and a birds eye view and one of the ones continuously being molded and shaped and hopefully refined by this path we are on.

But this is all so much more about the real hero of the story.  This is about Josiah.  It’s about all the ‘Josiahs’ in the world who live in bodies that defy them, who have no words to express themselves, who face challenges on a daily basis many of us can’t even begin to imagine.

This is about all those who for reasons we aren’t privy to this side of heaven endure daunting daily struggles, yet wake up with smiles on their faces.  Who are left out, ignored and dismissed.

This is for the ones who have no words to express their pain, no way to let you know they are suffering and need relief.  Who I can only imagine must work tirelessly trying to problem solve ways to get their message across, to help us understand.  Who out of desperation and anguish, punch themselves 500 times in 2 hours, while in attack mode on anyone brave enough (or foolish enough?) to stand in their way.

This is for the one who visited hospital Emergency Rooms 3 times in one week only to have a horde of strangers 3 times in one week burst into the room to restrain him on the bed to insert things in his body no one EVER wants inserted in the first place, all the while ignoring his scared cries and painful screams.

This is for the one who just doesn’t understand no matter how many times you explain or how many different ways you explain that it will all be over soon.  That no one is trying to hurt him.  That everyone is doing their best to help.

This is for the one who had no choice in the matter.  Who must endure because what other option did he have?

I was playing a game with a group of students recently.  We each rolled dice and depending upon the number rolled, had to answer a ‘getting to know you’ question.  I rolled a 5.  Share your favorite hero.  Most in the room given the same question would have responded with answers like Spider man or Superman or Batman maybe.

Without thinking I blurted out, My hero is my son, Josiah.  Choking on the words as tears began to flow, I tried to provide a brief explanation then pass the dice.

I was surprised by my emotional outburst.  I wasn’t however, surprised by my answer.

Josiah and all those like him are the true heroes, the ones who live their lives with courage, who persevere no matter how difficult the challenge, who inspire us to never give up, to keep doing the very best each day, to find joy in the moment, to celebrate life when it’s good and to be brave and strong when it’s not.  To love fiercely and with abandon.

And no matter what, to wake each morning with a smile!