I have no fear

This was originally written on October 15--while Dylan was in the hospital on the first of two trips in October 2012, before he died.  It was in draft form, but it stunned me how powerful it was, and at a time that was so ambiguous.  We actually went home a few days after this was drafted, and we got to celebrate Dylan's birthday--but his condition turned so rocky again that we had to return to the hospital--for the final time, it turned out.  I felt compelled to just clean it up (very lightly--didn't need much work), avoid messing with any of its original tone or purpose, and publish. 

Dylan is in the hospital again--admitted on his birthday.  Happy Birthday, sweet boy!  I'm sorry we had to postpone your ice cream party.

We have done a stunning job of avoiding this place for 10 months.  I know summer was on our side, and I know that it helped to keep Dylan's sphere of experience limited to the safe, cozy confines of our home.  Nevertheless, we managed to stay away from the clinic and spend those precious days taking him to the beach, laying him on the hammock, riding around in the car.

I walked back to the hospital proud that we were still here--that he is still here in the world with us.  We learned how to care for him--learned how to administer IPV treatments, cough assist, deep nasal and oral suctioning, and CPT.  We didn't rely on doctors, and didn't have to have conversations all the time about his "disease process."

I cannot discount that I was fueled by the trauma of our last experience in December, 2011.  The 2 1/2 weeks before Christmas was fraught with the stomach-turning, drastic ups and downs of a thrill ride at an amusement park--but it's not one we chose.  Right before we had to hospitalize him, Dylan had just started to show signs that he was at the point in his disease in which he needed respiratory support. Then he got pneumonia from aspirating--which can be deadly to an SMA child, and had many scary nights in the hospital. It was as if he was fine one moment, on the verge of dying the next.  Plus, we were fighting a disease that no one on your team of doctors thinks your son will survive.  When you've seen 99 SMA Type 1s die, naturally you're going to assume that #100 will, too.

There is an unspeakable, unbearable desperation when you find out that the people who are supposed to help heal your son, or at least help him survive, do not believe he will be okay.  But after surviving that hospital trip last year, I no longer worry about who will advocate for Dylan. 

I have no fear anymore of being the least experienced or knowledgeable in the room, or of questioning the medical team.  I know Dylan better than anyone else, including these doctors.  Knowing Dylan is the one thing I've truly mastered in my life. It is my greatest accomplishment.  The best doctors pay respect to that knowledge, defer to it.

I have no fear that we will suffer the pain of having to make unbearable decisions about Dylan.  I am convinced that he will stay for as long as he is supposed to and respond to the call quickly when summoned by God.  I am certain we will be absolutely blindsided by his departure, and still I have no fear.