Last week, after being in the hospital for 3 days, Josiah had a great week.  Not just a good week, but one for the books really.  It was the first time in a long time he was happy and calm (for the most part), sweet and smiley.

He’s still wearing his big, bulky, probably-too-heavy helmet.  The soft one with ear protection was unfortunately much too large. I sent it back and now Josiah LIVES in the Pro-tec skater helmet.

We’ve tried taking it off of him periodically.  He resists.  Josiah loves wearing a helmet.  I’m not sure why.  The upside is his ears are getting a break from incessant pummeling and have healed nicely.  The downside is he’s started punching other parts of his body.

I’m relieved Josiah stopped punching his ears. Thankfully, they are safe. The rest of his unprotected body is not.  A few different times this week, Josiah punched his thighs.  The left one hard and often enough to cause a red welt.

You’d think I’d know better than to push my luck, but ever the optimist, I decided to take full advantage of the ‘improved’ behavior and take Josiah to the movies.

What was I thinking? He’s never really liked going to the movies. Not with me anyway.  One of his amazing caregivers has had better success and often times is able to make it through a whole movie with Josiah.  I’m not sure how she does it.  But it’s not something either of us have done with him lately.

Besides, Josiah only ever seems to pay attention at the very end, as the credits roll.  He is hyper focused on the screen then. Not quite sure why.  The rest of the time we ‘occupy’ him with snacks and popcorn to make it through til the end.

When I mentioned Saturday we should take Josiah to see ‘The Greatest Showman, (my new all time favorite movie) Rick and one of Josiah’s amazing caregivers looked at me like I was crazy. He was doing really great that morning; all bathroom issues resolved early in the day.  We had his stroller/wheel chair to ensure he stayed put.  What could go wrong?

Josiah enjoyed the ride to the theater, 20 minutes away to get cheap tickets.  This was to be my 4th time to see the movie (if you haven’t seen it, and you like musicals, I HIGHLY recommend it).  He did not want to get out of the car however, did not want to sit in his wheel chair, did not want to stroll into the building and let us know quite clearly by resisting at every turn.

When he screamed loudly as I was buying tickets and even louder while I was purchasing popcorn, I should have stopped, turned around and taken us all home.  HUGE red flags were being thrown at me the best way Josiah could throw them.

It’s really a great movie though with lots of singing which Josiah enjoys.  Plus we had the popcorn, which he really enjoys. Excuses really, but at the time they worked for me.

We made it through the first 25-30 minutes before Josiah let out a manic type giggle during a quite scene, followed by intense shrieking shortly after.  I raced through the very dark theater trying in vain to release the brakes on his chair and get out of there as fast as we could.

I told the caregiver to stay and enjoy the rest of the show.  Josiah and I would ride around the parking lot until it was over. Just outside the doors of the movie, he started punching his face.  Not his ears, not his thighs, but his FACE….his left cheek to be exact.  He punched so hard I thought he might break some teeth.

Trying to wheel him out the doors, through the parking lot and get him safely strapped in the car with one hand, while blocking the blows to protect his face was not easy.  He screamed and bellowed and cried huge crocodile tears as I did my best to calm and comfort him.

I drove around with upbeat music playing thinking it might help distract and relax him. After about 5 minutes, (which felt more like 50) he let out a few loud burps.  The crying stopped immediately.

From that moment on he was happy.

His poor face however, not so much.  His left cheek is swollen and bruised with a small scab forming where he broke open the skin.

Thank you for your prayers which made a huge impact all last week, up until I pushed the envelope and forced the movie issue.  Please keep them coming. We greatly appreciate each and every one.

I’m not a mom who gives up and throws in the towel.  We will continue to figure this out and do whatever is necessary to FIX this, to keep Josiah from hurting himself and to heal whatever is hurting him.  Searching the web now for possible solutions.

Not sure how much these cost, but praying they come in junior sizes.