I sat next to the ambulance driver in silence.  I felt numbed with fear.  My hands nervously fumbled with the items inside the small overnight bag I held on my lap.  The bag I had made ready-for the just in case- we would not be back home tonight.  My fingers grazed the soft fur of  Josiah's stuffed green Mind craft Creeper man.  His comfort possesion.    I smiled slightly  as an  image of Josiah snuggled in his own bed with his arms wrapped around the Creeper guy flashed in front of me. Oh how I wished that was where we would be right now.   I sat in my silence listening to the conversations behind me.  I could here the EMT's soft voices as they sat next to Josiah in the back.  For every bump we felt in the road they made small apologies to him for the discomfort.  Then, every so often, I'd hear  "you are doing great Josiah."  I imagined Josiah just looking at them with  his big brown eyes, smiling back.  He was in good hands now and his vital  numbers were looking good.   I knew I had to trust he would be okay.  But the fear of "knowing" almost strangled me. 

I had seen the numbers on his oximeter earlier. I heard the fear in the telle -nurse's voice as I read her the numbers displayed on the meter.  I had heard the concern from the 911 dispatcher as we waited for the ambulance. And I knew Duchenne was merciless.  It did not yield when it made its claim on its victim.  Most importantly I  saw the fear in  Josiah's eyes as he described to me what he was feeling while we waited for help.

I adjusted my self slightly  in my seat and replayed the events of the last few hours in my mind.  It just did not make sense to me that his heart rate readings went so high.  He was on a Beta blocker.  His last echo was actually normal.  His oxygen  level and his past history with pneumonia did give me concern that possibly there was something happening in the lungs.  I could feel the fear growing in me again.  It was almost one year to the date that Josiah had last been hospitalized for pneumonia complicated with uncontrolled seizures. It was a very scary two weeks in the hospital  where I watched Josiah crash  twice before he finally made a turn for the better and started to respond to treatment.  It was also during that stay when he was diagnosed with epilepsy. Another disease to add to the list that already complicated his fatal diagnosis. 

 I could feel  tears threatening me again.   I was tired and scared.  The reality was- to date  Duchenne  remained a killer. An untreatable fatal disease often  complicated by other underlying symptoms from other ailments or diseases.  Simply put their are no survivors.  So, I was scared, we had escaped death a year ago.  This is a fear every parent with a child living with Duchenne faces at some point in their journey. 
 
The ambulance pulled up to the emergency doors.  I watched as they unloaded my baby, my last born. his smile warmed my heart.   I  felt a sense of  relief that soon I  could have some  answers as to what was happening or happened with Josiah. I knew I had to be strong. Josiah needed me to be.

We did not spend the night in the hospital.  Three hours later Josiah was given a complete clear and released to go home.  Every blood test they did came back normal.    We wont ever know why or what made Josiah's numbers go so crazy.  Its possible that Josiah may have experienced a panic attack and that sort of sent signals off.  I however feel blessed and will gladly take that answer.   I am over joyed to say, Josiah has been seizure free and no signs of pneumonia for a year. His ekg and echo all read normal his lung x-rays look great.   I don't know the ' when and how" and I try not to think much about that.  We have " now"  and I will run with that.