Yesterday we took a road trip to Brooklyn for Ezzy’s little cousin’s first birthday party. It was really important to me that we make the trip to celebrate Lucy for a number of reasons. As I wrote last year soon after Lucy was born, I am certain that these two girls will share a strong bond….and I want to do everything I can to support that bond. They have seemed to recognize something in each other from the first time they spent time together, when Ezzy reached out to hold Lucy’s hand when she cried.

Yesterday Lucy stood on foot rest of Ezzy’s wheelchair so they could share a toy together. They were so patient and caring with each other.


It makes me so very happy to think that Lucy and Esmé will be each other’s friends as they grow. I am proud that from the very beginning of Lucy’s life she has been learning compassion and caring for those who are different from her. And I know that Lucy will be an important connection to the world of “typically” developing kids for Esmé.
It is not an accident that these cousins get along so well–Lucy’s parents and grandparents have all made a clear and consistent effort to encourage a healthy connection between them while making sure both of these beautiful children feel so well loved for being exactly who they are. And there is a lot to love about these girls. They are both so sweet and silly and fearless.
I would be lying if I said that a year ago I wasn’t apprehensive to meet my new niece. I was afraid that I wouldn’t know how to interact with her. I was afraid that I wouldn’t be able to allow myself to love her…But once I met her–once I held her–I stopped being afraid. It was easy to love Lucy for who she is. There have been times that seeing her grow has reminded me of how hard things have been for us with Ez, but that has never stopped me from feeling the full force of my love for her. More than anything, knowing Lucy has brought me great peace–knowing that she is healthy and strong, watching her achieve new things also reminds me that it is possible, that it doesn’t always have to be so hard. And it is especially wonderful to know that her parents do recognize how very lucky they are that Lucy is healthy.
Yesterday while watching Lucy enjoy her party and her cake I found myself thinking back to Esmé’s first birthday, which was, by design, almost a non-event. We had decided that it would be a poor choice to celebrate Esmé’s birthday with a party because only a few weeks before, on the day after Christmas, Esmé had six seizures. We didn’t know what they were at the time, but she had turned blue repeatedly so we had called an ambulance and spent a few nights in the Pediatric Intensive Care Unit. We felt that, whatever these “spells” were, they were brought on by all of the excitement around the holiday. Much to my family’s dismay, we decided to rule out the question of a party by taking Esmé for an overnight to Boston to celebrate at the Aquarium, just the three of us. That way we were close to the Children’s Hospital if we had any problems. She did great that trip but the following week she was back in the hospital for more “spells” that we now know were seizures. 
We’ve never had a birthday party for Ez for so many reasons, but unlike the other missed events, I still get a pit in my stomach when I think of that first birthday…of being unable to celebrate that milestone in the “typical” way with loved ones…of knowing that a celebration of her birth automatically implied recognition of her almost not living, of those difficult early days of realizing things weren’t going to be typical for us.
Yesterday while sitting in the park watching Lucy celebrate with her loved ones I felt that pit relax a little more…the fear and disappointment giving way to acceptance and love…and relief that the story of Lucy’s first birthday is, simply, celebration.
It is still two days before her actual birthday, but happy birthday Lucy. Thanks for being you.

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