Last week, one of my cousins overseas had a baby. Apparently he was admitted into the ICU shortly after being born and we weren't getting any details. I cannot explain to you the terror my parents and I experienced those few days until we found out it was just an infection and that everything would be fine. The parents and the grandparents of this baby now have a minuscule glimpse at what that terror is. As much as they love us, that part of the family has never really been involved, so they have no idea what my parents went through all these years with literally no family around.
I pray they never have to find out.
This week, I had an 11-year-old patient whose paperwork said "status-post Fontan surgery." And suddenly the words became blurry. Fontan is not a word I see every day, and it took me by surprise, right back to those days of not knowing what was happening or what would happen, or if I'd ever get to see my brother again. I can't help but cry.
I don't have any idea how she found out, but my mom got wind of this patient and happened to bump into the kid's mother in the hall. Seventeen years ago, our family was in a similar situation. The other mother's first question? "Please tell me your son is 40!" After scolding the woman for thinking she was old enough to have a forty-year-old son, my mom told her all about my gem of a brother. Soon, they were both crying together.
Yesterday, a friend from high school emailed me about a 19-month-old she knows who has been battling a heart condition since before even coming out into the world. And they have another (healthy) baby on the way. I am definitely sending love to her family, because I know it's not going to be easy, even though I really really hope that it will.
Basically, my heart breaks every time I think about how much my brother has suffered. And while it's such a miracle that he's 28, a college graduate who went away to school, has a real job that takes him all over the country and handles his business every single day--never once using his situation to make excuses, he will never be free from the medicine and the checkups and the memories. It's almost too much for me to even think about, let alone imagine. And I will never be free from my own set of memories. It kills me that there are other kids and other families out there that have to go through it too. All I can do is pray for them and hope that they will surround their kids with as much love as we have been lucky to have.