an update on baby a

A month back, I asked for your help in lifting the spirits of some people very near to my heart. Baby A brought me more hope and comfort than she will ever know. So my heart sparkled as I received close to 100 notes and cards sent by so many of you.

When we were in NYC for Matilda's appointments, I was able to peek in and see her! Her mom was there, by chance, and welcomed us in with the biggest smiles. Baby A looked so beautiful. She is small, but her smile beams bright. 

The exchange that she had with Matilda was beautiful. Tilda handed her one of the cards and the two friends spent a moment playing tug of war and tossing grins and giggles back and forth. The two of us (mothers) were of course, full of emotion. It is so hard to describe, but when we are together I lose all control over my emotions. To stand with someone who knows the pain. Who understands what it is like to want a life for a child so badly. To give birth with one expectation and then live a life you never could have imagined. To wheel your baby down to the OR knowing that might be the last moment together, but trusting it is the only choice. We understand each other's pain. And the relief of knowing that is extraordinary. 

But I also feel an incredible amount of sadness, knowing that, although she understands what I went through, I cannot begin to understand her pain and sorrow. Baby A is still waiting for her second liver. She is still waiting to be home with her family. She is still waiting to explore the world. 

For now she will continue to wait in the hospital. Her parents live about three hours away. I cannot imagine how they feel, having to leave their baby each night in the hospital alone. Or to go days without seeing her beautiful face. 

Crying, we held each other, each with an 18-month-old baby on our hip.  Both were diagnosed with the same illness. Both waited across the hall from one another. Both underwent successful transplants. Yet, only one has made it out. 

Matilda and Baby A are fighters. They have the same spirit, the same kindness. And one day they will walk together outside of the hospital. One day.

Photos: Cathy Clarke, Mount Sinai Health System

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