Throwing Stones at the Thief

From left, Ingrid and Sarah; Bridget and Anna; me and Anna

When we were first diagnosed with Rett Syndrome in February, I spent some time "meeting" Rett girls through the Girl Power 2 Cure site and visiting some of the family blogs that were listed on the girls' personal pages. From time to time, I would see how some families got together and how their girls became friends.

I used to think, Oh my goodness how nice! How do you even begin to meet other families let alone actually spend time with them in their homes? I hope we can do that! 

On Saturday, five months in, we had our turn! It began with a chance meeting at the Rett Syndrome Center at Montefiore on Friday, when we were there with our Anna to meet with her GI. While in the hallway, we passed by a family and Sasha, our neurologist, introduced us. Bridget and Scott were visiting the center from Michigan, and also had an Anna! After exchanging contacts, we hurried off to our appointment and touched base later that day. They weren't leaving until late afternoon on Saturday from La Guardia, which is literally 10 minutes from our place, and so it just made sense to have them over for brunch! 

Saturday morning I woke up to my Blackberry buzzing with an e-mail from Ingrid, the founder of Girl Power 2 Cure, who was visiting New Jersey and who we had met briefly at Montefiore the week before. She heard from Bridget they were coming to our house and she also wanted to come visit. We couldn't have been more excited!

We all know our girls are special and wonderful souls who are so in-tune to everything around them. And when I met Anna and Sarah and saw our Anna with them, I couldn't help but feel a sense of "family" when the girls were in the room with each other. I saw Ingrid and Bridget, and I saw how strong they were. And we all know the familiarity of our stories. 

Their visit was a breath of fresh air. It had already been a hard week for Manny and I, anticipating Anna's 2nd birthday. For days I had been fighting back the thoughts that would permeate my emotional shelter every now and then of what life would be... Without... Rett Syndrome. We reminisced Gabe's 2nd birthday, a big party with family and friends where he walked, ran, talked, blew bubbles, blew out the candles on his cake, even hit a pinata. Turning 2, like any birthday, is a real milestone. It's supposed to be an exciting one.

This time, I felt a certain sense of betrayal. Think of how one feels after their house has been robbed. Or a sentimental piece of jewelry stolen or lost. I kept feeling this Betrayal. We were Robbed. Stolen. Violated. Only it wasn't a house or jewelry. It was our daughter, and she has been robbed of speech, hand control, normal eating and drinking and too much more to list, and Rett was the big bad thief. Last week I woke up every morning with "Rett" on my tongue and the F-word in front of it.

But spending time with these incredible mothers and daughters helped me see beyond what we'd all been robbed of because there are things Rett has no power over. It has no power over our ability to love our daughters so much it hurts. And Rett has no power over our ability to fight the symptoms and find a cure. It has no power over our hope that one day life will be different. 

Perhaps the best lesson I learned that day came from Anna's dad, Scott, when he answered my question, "Is it as hard for you as it is for us when you see a little girl your Anna's age?... and, how do you get over that?" His response? "I pick up a few pebbles and start hitting them." I laughed 'til I cried.

The very next day while in Sunday Mass, we were two pews behind a 2-year old little girl crawling all over her parents, "Mommy"-this and "Daddy"-that. I glanced at Manny, who had a smile on his face instead of the usual watery eyes we both get. 

"Throwing pebbles?" I asked him. "You bet," he said.