You Can't Un-Ring A Bell

Today's prayer request:
We would not be in a prison of fear because of Oliver's diagnosis or prognosis.

August 1, 2010

One year ago today---

It tumbles out of his mouth, like he has said it one thousand times. “We believe Oliver has Tuberous Sclerosis.”

As soon as he finishes the word “sclerosis”, I boldly ask “alright, be straight with me, what is the worst case scenario?” The doctor, shifts awkwardly, diverts his eyes. I realize he is uncomfortable with the answer. He says “it doesn't matter because all we need to focus on is Oliver.” What? It doesn't matter? Bull-crap! It does matter. This is my son's life we are talking about!

My maternal instinct is in overdrive.  Am I the only one wondering if we could be a bit more specific about the bomb that just went off in our lives? It doesn’t matter. Huh! Let me tell you one way it matters...maybe I need to start putting money in a Special Needs Trust instead of a NC-529 College Savings Account. Perhaps I need to go back to school to be a pharmacists and a speech therapist and a neurosurgeon.

I march myself to the parent computer lab. If this doctor won't tell me the Internet will. Nothing like Google to clear things up.

The florescent light overhead buzzes faintly. The first computer I try looks like it kicked the bucket six months ago. The “newer” (this is a kind description) computer comes on but, the keyboard isn't working properly. Go figure. Doesn't anyone know I am having a mental emergency here? I slam my fingers down trying to spell out those two words I that just exploded into my life. My fingers work with the sticky keyboard and T-o-b-e-r-o-s S-c-l-e-o-r-s-i-s is all I can manage. Google asks, “did you mean Tuberous Sclerosis?” Why yes Google,  I sure did.

I click the first link that pops up. My breath quickens. I wonder how bad is this going to be?

I start down the glowing screen.

“Rare Genetic Disorder” (ok already deduced that from the doctor).

“Non-cancerous brain tumors.” I exhale slowly. I hadn't heard it said like that before. Brain tumors. 

My eyes move down further “mental retardation.”  Then “severe behavior issues.” And, “...seizures are notoriously difficult to control.”

Click to page two: “70% of children are diagnosed with an Autism Spectrum Disorder and 80% have kidney lesions by the age of 10.”

Oliver has this? Andrew has this too? My All-American, healthy husband? My family of three, now has two people with a rare genetic disorder?!?

I sit there for a string of minutes held together by pearls of salty tears. I get caught up on the words...“mental retardation?” They still use those words? Really? Isn't there a nicer, better way to say it? We are talking about my baby here.

As I peel myself out of the chair I think of that saying “you can't un-ring a bell.” It is true. This knowledge I wanted so badly thirty minutes ago is now mine...forever. 

I can never go back.

________

Please check out www.r-word.org, an organization (along with the Special Olympics) that is working to eliminate the use of the "R-word."