Marsh has been with us for 1,602 days. I keep track because every day with him is a win for our family. And life teaches us how quickly a win can turn into a loss but I will my mind to NOT go in that direction.

I count the wins, no matter their size.

Like last night’s win for Isaac and his team and Isaac’s first baseball experience as catcher!:)

And every day with my children home may seem maddening to some but it gives my heart joy even in the most trying of times.

Moments like this one when I keep on eye on the game, one on the boys playing basketball, one on Daisy, and one to capture Marsh and Grandma playing on the playground…

These days added up together make a life. When Marshall was born 1,602 days ago, we didn’t know if he would get this far. Or how much time he would have to live his life. And here he is:

How long he will be here is not up to us.

It is up to us to give him the best life we can.

So we do.

Each day is a treasure (though at times I wish they would slow down!) And we have 83 more days home before Marsh returns to Boston as scheduled for what could be potentially Round 3.

Marsh is tentatively scheduled for preop on August 21 and OR August 22. The Fontan will be “high, high risk” according to Friedman. But Marsh is indeed a candidate for the operation which surprised even his Boston and home cardiology teams.

All of this is pending the MRI that we haven’t even been contacted to schedule yet… and it really is no rush.

Marsh is thriving. And growing. And learning. And defying all of us at times.

As long as he is well, I am all for taking our time, savoring summer, and living life beyond the hallways and beeps of Boston Children’s…