Sunday, June 15, 2014

Joyful Connection

The week has flown by. It feels like we just got to New York and now we are in New Jersey to see Dr. Roy Nuzzo. After conversations suggesting I bring David to see him, and hearing words like "genius" and "artist," I researched him online. Usually, when I research a doctor online, I get the standard medical sites with stats and reviews. This doctor actually has his own website. And like none I've ever seen. Instead of trying to measure stats, I can get on there and learn. There are images and clearly articulated explanations of procedures.

The expressiveness conveyed in the many pages of the website are astounding. Learning happens just by perusing the site. I can't wait to meet this doctor in person and I can't wait for him to see David! I have not read everything on there, but I started with things that I felt were most pertinent to David. This quote is spot on, and full of wit: "There are no right angles or squares in biology. Sorry." As I read more, I come up with questions and feel more educated. What a way to establish a quality relationship with patients.

Speaking of quality, at the suggestion of Marcy, we took David to see Dr. Steele, a highly esteemed pediatric opthamologist. Quite serendipitously, I was able to get an appointment for David in between his movement lessons because there was a cancellation. This was David's first eye doctor appointment in a long time.  After Dr. Steele examined David, we sat down and listened. The big news is: David can SEE. I know he has cortical visual impairment. Dr. Steele said the CVI is not serious. So I asked him wheat he meant by "see."  I asked if he thought David could see font. His answer was, yes, probably about a 20 point font. I cried. The implications of this are tremendous. This means READING. David loves to be read to. Our wonderful nanny reads chapter book after chapter book to him. He can't get enough. Since Dr. Steele gave us this information,  I've started thinking about ways that David can start reading on his own. How empowering is that? 

This means he can see our faces. I've often wondered how much David sees when I get on his level and talk to him. Now I imagine all the detail he sees and I use it to express things conversationally. This whole time, I've been convinced that he has been picking up on peoples emotions visually. This news was a huge affirmation. Having an idea of what David can see gives me the power to guide him into movement. 

That happened in David's lessons with Marcy. David had to turn his head to see something. In other words, he had to organize his body to go there. Not juts to roll to his side, but to get his whole body to see something. Or do something. Like give a high five. Marcy had David giving high fives and low fives. The variation thrilled David. He did some repeated high fives and started smiling and making exclamatory noise. 

When we were leaving, as I was talking to Marcy, I caught a glimpse of David and myself in the mirror. The feeling of holding him was different. We were both more comfortable. I could feel him doing less work. He had his elbow bent and his hand on my chest, leaning his head against me. I think he was looking in the mirror too. I can see him coming home to himself. In that moment, we got what we missed when he was a baby and connections were taken away. We got connected again. David with his neurological connections, and from there, our connection. It radiates and it keeps growing.

I'm happy and thankful that our whole family is on this trip. Being in close proximity has been a gift. David is experiencing wonderful changes from his lessons with Marcy, we received fantastic news from Dr. Steele, and we are all here together experiencing it. Logging off of our regular schedules has brought us closer. It makes us think about what we are going to do next instead of hopping on our personal treadmills of habit or duty. There is more laughter and more communication which compels us to connect.

We spent Father's Day today as a family. We went to the mall, to the park, and out to eat. Times like this are not taken for granted in this family because it requires much planning or plain luck for it to happen. And we celebrated all together. I am tremendously thankful for Jeremy. The boys are blessed with a loving, dedicated, intelligent, funny dad. He is an amazing role model and it moves me to see him with the boys. This week was full of bonding time with Dad. Unlike solo trips I have taken with David, I have been privileged to see him interact with Jeremy in new ways as he learns more from his movement lessons. I am enjoying watching Donnie and him hanging out together and noticing how many ways Donnie is so much like his dad. This trip isn't even over yet, and it has been full of growth and connection.

Happy Father's Day, Jeremy! 


  1. Oh Shana and Jeremy, Thank you so much for all that you are and for publishing this blog. I was so thrilled to hear the news about our little David and give thanks for blessings received. The pics are beautiful! Come home safe. Love, Grandaddy :)

  2. Awesome post, Shana! I know the feeling of finding out for the first time that your child can see! It is beyond explanation!!!