4/19/23

 One of my heart transplant mom friends sent me an article today that was in the New York Times. It was written by a lady that had a transplant when she was 25. She had a second transplant at some point and followed all the transplant rules with taking medications etc.

While reading the article something clicked in my brain. The author mentions that the way organ donation and transplant is set up, it is staged as an “overwhelming gift”. This gift is responsible for saving the day. A healing miracle. 

Because everyone sees the miracle, talks about the miracle and focuses on the miracle, it can leave the recipient less willing to talk about the challenges of transplant, creating a “gratitude paradox”.

This was a very small portion of the article but opened my thoughts to embrace the idea that in addition to the physical challenges Ethan had suffered through, the lack of control over his medical decisions, the heavy focus on how he should be so thankful casts shadows on processing feelings. 

Of course we were so thankful that Nicole and her family donated her organs generously. But our gratitude really over powers Ethan’s frustration, anger and depression from having a series of bad days, weeks, months and years.

What an odd struggle that I had never really considered. 

Tonight I brought Jiminy to bed with me. Occasionally I do this if it is going to be chilly. His little bones get chilled quickly. In our bed he cozies right up to me and sleeps soundly the entire night with little movement.

On our way up to bed I walked by Ethan’s room. I stood around the corner and held Jiminy up to appear as if Jiminy was looking around the corner. Ethan did one of his half smiles. They are genuine. I enjoy seeing them. That was my gift today.