Tuesday, October 2, 2012

Supposed to be Fine

As I am driving home, my mind starts to go to all those dark places. Because of what I have seen. Because of what I have learned.

I can feel my anxiety level rising. The baby coos in the back seat, unaware that her future might have just changed forever.

"Her head size is concerning," he says in his warm, thick accent. "But, let's first discuss her bleed. I want to do a repeat head ultrasound to make sure it is in fact resolving, as the last test indicated. In a few months, I want to do an MRI to look for scarring."

"And scarring would mean?" I can hear myself ask. This isn't going how I had expected. I had expected to be released from neurology consultation. Perhaps schedule a final ultrasound to confirm what I, as her mother, already know. Everything is fine. Everything is supposed to be fine.

"Scarring on her brain could mean that she will have limited mobility. Spasticity, similar to someone who has cerebral palsy. It is impossible to tell at this time if it will be unilateral or bilateral. It could have an impact on her ability to walk. We just don't know at this time. We probably won't know the full effects until she is at least one year of age."

I feel my mind come to a screeching halt. Inside, I am rebelling against what is being presented to me. I can't quite make my mouth form a coherent sentence, so I remain quiet.

He looks to me for a response. When I say nothing, he continues.

"What is concerning me most at this time is her head size. She is in the 95th percentile. We really can't know until we do the ultrasound, but it's possible that she has extra fluid on her brain as a result of the bleed. Her fontanelle is generous, so we should be able to see everything easily. If the results come back inconclusive or the view is somehow occluded, we know we need to be concerned." His hand is resting on my shoulder now. His hand is cold, but I somehow can barely feel the pressure of it. Probably because the weight in my chest is enough to cancel out any other sensory input.

"Do you have any other questions?" he asks.

Yes, actually. Why me? Why my kid? What did we do to deserve this?

"Not at this time, thanks."

Follow-up appointments and diagnostic tests are scheduled in a haze. They want us back just before Christmas. What a horrible time for bad news, if there is any.

I get home and hold my sweet girl for a long time, looking into her face. I let my tears flow freely as I take in her innocence. Her cheeks are chubby and cherub-like. Her blue eyes are clear, intelligent, curious. She is perfect and beautiful. And I am terrified.

I feel guilty because I know so many wonderful people with disabilities. They are people I have worked with, people I am friends with, people I love. But, as a parent, I think all of us have that little voice inside that says "not my kid".

I think the hardest part is the waiting. Because, for a while, we just won't know.