Monday, July 7, 2014

To Boston, To Boston

In June we traveled to Virginia for the ordination to the priesthood of a good friend of mine. From our seat in the back pew of the side aisle of the cathedral, I could see an interpreter, dressed in black. I commented as much to my friend and she responded, "Oh yeah. They always reserve that pew for people with hearing impairments."

We have hearing impairments. We don't really need an interpreter but the front row seats beckoned to me. I went and asked the interpreter if he thought any other Deaf people would be sitting in the pew; people who would actually need to be able to see him, and he insisted there would be plenty of room and we should sit there. So we did.

If we have to do it, we might as well do it.

I've said this to myself a lot in the years spanning the time we learned that we had a child with hearing loss. We picked out fun, hot pink processors after Gianna's cochlear implant surgery because if we have to do it, we might as well do it. All the way.

This week in Boston is the International Symposium on Usher Syndrome and Family Conference. Just my mom, Gianna, and I are going. They are going to do fun stuff, like check out the American Girl store and ride the T and visit the Children's Museum. Because if we have to do it, we're going to do it. I, on the other hand, will be sitting in presentations given by researchers from all over the world. The topics have titles like "Unsuspected Phenotypic Heterogeneity in Usher Syndrome Revealed by Massive Parallel Sequencing" and "Study of Splicing variants in the USH genes through minigene assay and transcript analysis."

Guys. I was an English major. I barely remember the Punnett Square from high school biology. To say I feel ill-equipped is an understatement. I'm bringing business-casual clothes, and my glasses that make me feel smart, and my iPad mini, and I'm going to sit in the front and take notes. If I have to do this, I'm going to do it.

The hard part is that I don't actually want to do it. I don't actually want to go to Boston, even though it is a lovely city and I enjoy traveling and under any other circumstance I would be thrilled to take Gianna on a little trip with my mom. I don't actually want to attend this conference, because I don't actually want to be an Usher Family.

It feels kind of good to put that on paper. For months leading up to this trip, I've repeated to myself internally,"We have Usher. My girls have Usher. We are an Usher Family. This is part of who we are" just to make myself believe it and accept it but most of the time it still feels so surreal. I'm nervous about taking Gianna to the family portion of the conference. We've spoken in broad terms about what is slowly happening to her eyes but at this conference there is no escaping it: there will be blind people there. They will have guide dogs and white canes and Gianna will see them. It is hard not to let my worries and fears run away with me.

I am trying to remember that there will be talk of promising gene therapy there, and a barbeque, and the blind people will become people with stories. Stories of struggles and successes and hopes and dreams and insights. There will be other moms there who are farther along in this journey than I am. We'll probably even have fun and make life-long friendships. I'm trying to remember that if we have to do this Usher thing, we might as well do it.

1 comment:

  1. You are amazing. I adore your honesty and think you are so brave to face this head on.