Monday, July 27, 2009

Good Grief

When the diagnosis was definitively made, it felt like falling through time and space, my arms stretched wide open and my chest burning red. I had known it was coming. I had put Sean’s “symptoms” into a Google search engine, like a vacationing retiree stuffs quarters into a slot machine, hoping to come up with stacks of golden bars or ripe red cherries but walking away with only empty pockets.

When the words were said out loud by a doctor it was like being punched in the throat. I could hardly breathe. Once the words were spoken it all became real. It had breath and muscle. It was not going away. This was nothing that I could fix.

I still remember that day. I can still see Sean playing on the floor with stacking rings. I remember seeing my husband reach for my hand but I could hardly feel his, my fingers numb and my palms damp. I knew the words were coming like a commuter knows the time of his morning train. But when it arrived I remember wishing I had put off the appointment, covered my ears or left. It hurt so much more than I had anticipated.

Sean's official diagnosis is PDD-NOS Pervasive Developmental Delay - Not Otherwise Specified. Somehow the NOS part always makes me chuckle. PDD-NOS -- the acronym sounds so definite and exact. The Ah-ha! When the reality is that it's incredibly uncertain and vague. That's the tough part of autism. There's so much ambiguity. The spectrum is large, a vast sea of symptoms and degrees. It's the holding cell where you are initially placed.

It took a long time for it to really sink in -- the diagnosis. I would watch my older son at the park or on the soccer field, his face salted with freckles and his cheeks flushed, laughing with his friends, and I would feel such sadness in my bones. I would walk past a park full of little kids on swings, their small feet tapping the sky and my heart would catch in my throat, my eyes stinging. Why? It wasn't the end of the world. We would make the best of it, right?

I couldn't understand it until a friend explained to me that what I was feeling was grief. I was grieving for the life I thought Sean would have. For the life I thought all of us would have. I was sad for my older son who wouldn't have a brother like I had promised him when Sean was born. A play mate. A best friend. And mostly, I was grieving for the boy Sean might have been if it were not for autism.

In time, I learned that grieving was actually good and normal. I had to dry out the wounds, let go off the heaviness and to love, completely and fully, what I had and give thanks. I had to not only for me but for my husband and children. I had to grieve and I had to move forward. I couldn't remain stuck. The diagnosis already took away so much from me and I couldn't afford to let it take anymore. My family needed me. I needed me.

Life is tricky. In a blink of an eye, everything can change. One moment your course is set for one direction and in an instant, it breaks like a thick vein of lightening bolting you in the opposite direction. Is the lesson not to become too comfortable or to live in the moment or take nothing for granted? Maybe it is all three. Maybe it is none of these.

I used to think I had much more control over life's outcome. The older I get the more I realize how complex it all is. I've learned to take each day as it comes -- peel off the skin and head in teeth first and eyes shut. In the end, it's all a gamble. There are no guarantees. There are no sure bets in life. I'll take my chances.

1 comment:

jsanta said...

Katie: You have seen me at the slot machines ( in fact you introduced me to slot machines) so you know I am a betting woman... all my money ( and love) is on you! js