Monday, October 3, 2011

The Bubble

Three years ago, I was sweating in front of 900 pediatricians, preparing to tell Jordan's story.
I was convinced of the need to share our story, and without a doubt, it was the need to inform that outweighed the panic and cold sweat of the moment as I stared into the swarm.

Three years later, I stood before a hall of ninety pediatricians who attended our Pediatric Audiology Network session at the National Pediatric Conference and led the discussion that went from citomegalovirus to the state of the screening from region to region to the great national debate as to why the Italian government still has not passed Newborn Hearing Screening on a National level.
For the past three years, I have been collecting contacts, begging for email addresses, screaming to be heard, demanding to be considered...and suddenly
People are asking for my help.

I had a ci surgeon who has a number of patients who are on my forum contact me to explain that his Audiologist, Speech Therapist and Audiometrist are currently working and not getting paid because their contracts were cut. Flat out cut.
He asked me to help him by using my blog to publicize the situation.
So I did. I hope to help him, but I am only one person.

I began this mission convinced that one pediatrician equals one thousand children. 1-3 children are born with a hearing loss. The more I speak, the more children I can potentially reach. This year, we held courses for a total of 1,300 pediatricians.
Do the Math.

No matter how much you work, how many people you reach or touch...
There is still so, so much to be done.

When you can't touch the problem, it can't touch you.

After the pediatric session in Torino, I went to visit a Mom and her 18 month old who had just awakened after bilateral ci surgery. His mom was holding him as he awoke.

One hour later I was with a group of families from the forum who decided to meet. There were both adults and children with a ci. Chatting by means of computer just isn't the same as watching three kids meet themselves for the first time. Each of them stared at the other ones' processors and smiled. And the parents drank their glasses of water amidst a climate of empathy.

It's nice not to have to explain and to, just for once, simply be understood.

Sometimes, life should be lived in a bubble.

1 comment:

Kat said...

This bubble is exactly how our family felt at The John Tracy Clinic this summer...all the families "understood" everyone "got it" was simply amazing to be with people just like us. The bubble is precious, rare and something to celebrate.

We thank you for all your work...reaching even one child or one doctor or one adult is enough to keep writing. So, keep writing sista!