In my 6 years of parenting a disabled child, I've seen the full spectrum of how the experience can affect a person. I've known parents who are beaten down and defeated by a minor disability, and those who have triumphed and found happiness despite the most extreme diagnosis.
Some have the skills to survive with their sanity and happiness intact, some may debate the sanity part, but as for the survival, I've got mad skills.
In the immediate aftermath of Owen's birth, as doctors and nurses ran into the room, as Owen was whisked away, as Al and I sat, empty armed, wondering if we'd ever see our baby alive, I was absolutely calm. Too calm.
Shock is a weird and wonderful thing. I didn't exactly have an out of body experience, but that's the closest I can come to describing what I did in those hours.
I didn't just give birth to the mostly dead baby. That poor girl over there did.
I stood back and watched those poor new parents as they talked to the doctors, as they were given the ever worsening updates, as the nurses came in crying, as Tulpen made those awful phone calls to her family.
When I wasn't feeling sorry for the Tulpen whose baby might die, I was visiting with the Tulpen whose baby was whole and healthy. She was much nicer to be around. She was glowing, Al bursting with pride. They passed their baby back and forth, taking turns holding him and talking on the phone bragging about their perfect little boy.
I bopped between these Tulpens that entire first day, getting updates on Owen's condition from the broken Tulpen, and then heading right back to happy Tulpen.
Over the next few days, as the shock started to wear off, as I got into a routine in the ICU in Boston, as I began to digest what had happened to my life, the other Tulpens began to fade away. They had done an important job, they were a buffer against the horror of those first days.
Once I landed back inside myself, I looked around at what was in front of me, and back at where I'd been leading up to this.
The day that Owen was put on ECMO for the second time, the day we were sure he was going to die, I remember everything about the conversation with his surgeon Rusty; what the room looked like, how we were seated in relation to each other. He was telling us how risky a second round was, how it was very rarely attempted, how he might open Owen up and find that his lungs had no chance of healing, how he'd put Owen on a lung transplant list and how Owen would never live to receive new lungs.
When Rusty was done explaining he asked us;
"Does this all make sense?"
I flatly replied;
"Nothing makes sense."
As the words came out of my mouth, in my head I heard;
It all makes sense.
All of a sudden, in that moment, my whole life made sense:
My lifelong fascination with religion, spirituality and death, that led me to study Philosophy, that introduced me to the Tao, that taught me that what is, is.
My adventurous youth, travels abroad, across this country, and within my own mind.
The practical knowlege I had as a nurse that allowed me to understand what the big brains were saying about my child.
All the pieces fell into the puzzle and I felt fully prepared and ready to move forward.
And move forward I have, without anger or bitterness or why me?
I've managed to survive with my happiness, my sanity (shut up), and myself intact.