❤️ Listed Status 1B

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Great News!  On this day November 11 th, 2003, we were released from Golisano’s Children Hospital after Ethan’s first heart surgery. I remember getting him home.  He was asleep and we transferred him into his crib. As Paul and I made our way out to the living room we heard this wonderful belly laugh from Ethan’s room.  He was so happy to see his room, his toys, his pets.

I never would have thought that 17 years later, on this very same day, he would be listed at a status 1B and we would feel happy about that. Little by little, a little progress becomes a lot of progress!

I got to meet, in person, the teen and his mom that lives just a few miles from us, that also went through a transplant a couple years ago. They were so supportive and patient.  They answered all my questions and were great to talk to.

I tried to Uber back to the apartment to shower.  Seems simple.  It was raining and as I tell the kids when it rains, God was crying probably because of something they did wrong. They know I am kidding. I stood out in the rain for a good 10 minutes as my first Uber somehow just never showed up.  Then another u we finally arrived. I Rode in the car, soaking wet ready for my warm shower. I got to our building, was fiddling around trying to find my key.... yep....still raining.

I stood in the rain for another several minutes waiting for another Uber.  What an unsuccessful mission. Ethan’s nurse took pity on me and gave me a towel and some soap.  Maybe she didn’t want to smell me anymore.  Typical shit show.  Who cares my kid is now in line for a new heart.