Diagnosis

The day that Ollie was diagnosed with what the doctors assumed was pneumonia I completely fell apart.  Until this point I had tried to be stoic and optimistic whenever I was around Ollie.  But, I knew, from my research, that pneumonia was often the cause of death in children with SMA.  We got the messages while Neil and Bekka were at the doctor’s office and that evening came over to the house to go out and get his prescriptions filled for them.  We came home from work before going over there, and I fell apart in Dave’s arms.  I told him what I knew and listened to his optimistic encouragement that Ollie would/could be different.  I tried, SO HARD, to stop crying while we drove the few miles to Ollie’s.  And then I walked into the house and lost it all over again.  I knelt by the couch and played with his hair and rubbed his head and cried and cried and cried.  I was still trying to hide it all but of course Bekka noticed and then she said the most amazing thing:

“It’s okay.  It’s okay.  You can cry all you need to and it will not bother us.  It’s okay.”

We all try so hard to be strong for them and I often wonder if that is, in fact, what they need.  Maybe watching us fall to pieces would give them the trust to fall to pieces with us.

I think about the morning that Ollie passed away ALL THE TIME.  And I think about writing about it, and then it feels too sacred, too personal.  But it is so strange to keep to myself.  Part of me wants others to know and experience that morning JUST so they will know what it is really like.  Or maybe just so that I will not be the only one thinking about it.  I don’t know.