TERRIBLY SAD WEEKEND

Two CHARGE babies, Ryoto and Rebekah, passed away this weekend due to complications from heart surgery...the same surgery that Maxwell had performed in November. Our CHARGE community is in deep mourning over these terrible losses.

It was particularly difficult learning of Ryoto. I absolutely lost it when I read the email this morning and it has consumed my thoughts today. He and Max were born within weeks of each other at Swedish Hospital and then tranferred to Children's.

Everyone was amazed that there were two CHARGE kiddos at Children's at the same time. They actually became a trio when Evan joined us a few months later...which surprised everyone. It's a pretty rare disorder.

Ryoto and his parents were the first CHARGE family that I had met and they were incredibly supportive of me during some very trying days with Maxwell. They often brought presents and cards to Maxwell celebrating his successes or comforting me in scary times. In Japan, they celebrate 100 Days of Life, so that day was particularly greeted with much enthusiasm from Ryoto's family and me too...another excuse for me to eat cake! Ryoto's mom, Akiko, and his older brother even came to the hospital on Max's discharge day to wish us well on our send off.

And now this loving, wonderful family must say goodbye to their sweet angel, Ryoto. I am so sad for his parents...and his adorable brother Souma...will he even remember his little brother? How will he handle all of this?

With Max and Ryoto having such similar beginnings, losing him reminds me of how easily we could have lost my lil' baby too. I feel so connected to this loss and my heart is aching. Life is incredibly fragile and this weekend's shocking news reminded me too harshly of this reality.

Please keep the families of Ryoto and Rebekah in your prayers.