July 23, 2015

Ten days and counting

I woke up this morning with the surreal realization that Evan will have surgery ten days from today. It has been scheduled for a couple months, and in my mind it has always been so far away. Today we went to NYC for pre-surgical visits and Evan will have 5 appointments in the next 2 days. 

The scheduling aspect of this surgery is pretty chaotic but we have a place to stay and are lucky enough to have family who will join us in NYC and stay with Aria at home so she can take a class she's interested in.

Going through this process a second time is a really different feeling. The logistics are easier but it was harder to get in the right head space. What I know about this experience is that it will challenge us in ways we never expect and as prepared as we think we are, there will be surprises. We will have experiences ranging from inspiring to unbearable and will not be able to plan how each day will go. Surgery days are the hardest and are filled with anticipation and lots of just waiting around.

Understandably, Evan is nervous and we do our best to ease his concerns with honest and optimistic answers. We have had a lot of challenging conversations lately!

Sometimes people say they don't know how we do it and I usually make a joke about being addicted to coffee. If I really think about it I can honestly say I don't know how we do it either. As a parent dealing with a child's chronic medical condition you cherish what goes well and no matter how hard things are on us, the hand Evan has been dealt is so much harder. He has a string spirit and always manages to rise above his own circumstances. Evan bounds through life with a confident smile and is always ready with a joke. His laugh is infectious and he has a way of drawing people in. We look to Evan for strength and guidance and if we are wise we follow his lead.

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