Saturday, July 19, 2014

And Weekend Always Go Fast

The summer Pia was born lives in my memory as the summer of popsicles. It was so incredibly hot that over the Fourth of July weekend, when I painted her changing table a fun, new color, the paint dried almost immediately. Great with child, I kept wandering over to the inflated baby pool to cool off amidst the splashing and shrieks of a freshly five-year-old Gianna and a two-and-a-half-year-old Dominic.

After Pia arrived, our family and friends completely spoiled us with visits and meals and gifts. In my experience, the first few days after having a baby are the best. I've not had to go to the hospital to have my babies, so I'm already tucked peacefully in my own bed, hearing the sounds of my household humming along joyfully while I snuggle my new babe.

My Babymoon with Pia also lives in infamy because Brad was able to take off almost 4 weeks from work. I wish every new mom had that luxury. He took the big kids to the pool almost everyday, made breakfast and lunch, was able to be present with me in the quiet, magic moments newborns create and also be there as a support in the moments when I seemed to be going off kilter with three small people needing so many things at once.

Mostly, though, that summer was idyllic because we didn't know about Usher Syndrome. Of course I wasn't completely worry-free; I worried over the same things all mothers with newborns worry about, and some extras. I could tell, even in those early days, that Pia might not pass her hearing test, but that didn't seem as scary since we'd already dealt with hearing loss. I had a team of people to rely on, I understood the cochlea and speech therapy. I understood that it wasn't going to be easy, but I knew the tools we had available and I knew how to use them.

As we've celebrated Pia's second birthday this weekend, I've reflected on that summer and I've wished to go back in time and push the pause button. No one gets older, no one goes back to work, no one progressively loses their vision. That's not possible or healthy, of course, I chide myself, but sometimes I long for it.

 It occurs to me, though, that I always knew we were living with Usher Syndrome. It just didn't have a name. When Gianna was born, I remember wondering if she was going to be ok. I remember standing at the changing table with Pia and unbidden, the thought jumping to my mind, "I hope she's going to be alright."

I never once had those thoughts about Dominic. I know those thoughts were the shadow of Usher. I still worry. A lot. I still have those thoughts jumping to my mind, watching Gianna play Marco-Polo in the pool or Pia struggling to walk on uneven surfaces. Sometimes I'm just driving down the road and they come to me, along with a sudden tightness in my chest and I have to take a very, deep, slow breath. Now, though, I can name these thoughts and this anxiety. It is named Usher Syndrome and we are surviving it. In fact, I look at the smiles on the faces of my girls, the joy they bring to our family and the broader community and I realize, we are even thriving despite it.

I'm so glad we have our PiaBaby. I love to watch Gianna and Dominic dote on her and encourage her to use her little voice. As much I want to go back to the summer she was born and stay there, life is speeding along, and I've spent much of her two short years here worrying and struggling with grief. I know now that the grief cycle replaying itself is part of living with Usher Syndrome as milestones are delayed or missed, as changes in vision take place and new accommodations must be made.

These two years were gone so quickly. I can't get them back. I blinked and today I have a seven year old and a four-and-a-half year old and a two year old. Today, everything is ok. I'm going to be in this moment, this weekend, and hang on to it until it slips by in to the next moment; whether it will be peaceful or difficult or sad or joyful and know that nothing was wasted.

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.