Our local heart support group held a CHD forum Monday night, with various people with different relationships to a child with CHD (Mom, Dad, Grandma, Friend, Sibling, Child with, Adult with, Angel Mom) talking about their experiences. The fellow heart mom talked about hospital triggers and the importance of self care, and I have been thinking through some things ever since.
Before my brother died, I lived inside a bubble most 17 year olds in my situation live in. I lived in a small town, with loving Christian parents, and I had a relatively golden upbringing. I know this isn’t the case for all kids, but for me, life was good. Bad things didn’t happen to families like mine, to people like me. I was 17. I was oblivious.
So as we were driving to Omaha in the backseat of my pastor’s car, to see my brother who had been life-flighted after a horrible car accident involving a semi, in my mind, everything was going to be okay. I remember I kept telling my mom “It’s going to be okay; he’s going to be okay.” I was scared, yes, but no part of me thought he was actually going to die. That just couldn’t happen.
But it did. He was gone before I got to see him. I never got to say goodbye to my brother.
My grandmother spent time in the hospital just weeks after we buried my brother. And I wanted to be right there as much as possible. I was determined to be able to say goodbye. I never shared this with anyone at the time, but I was obsessed with wanting to be with her when she passed.
She recovered and went home, but she went back into the hospital – and it was the end this time – shortly after I graduated from high school that next spring. We knew it was the end and that it would be time to say goodbye. I remember, again, wanting to be there when she passed. I stayed close. I was in the room a lot.
And then, my best friend and her dad came and took me to Pizza Ranch to get something to eat. You guessed it. My grandmother passed away while I was away from the hospital. Again, I have never talked about this, because I never really pieced together why (and I thought it was a bit morbid)…but I was devastated that I wasn’t there with her when she passed. I wanted to have the opportunity to say goodbye that I never got with my brother. I wanted to be with her, because I wanted so desperately to have been able to be with him.
Fast forward a million days later, and it has finally occurred to me why I find self-care so difficult when I am in the hospital with Kiran. I fly through showers and have people deliver me food to his room so I don’t have to leave. I refuse to spend the night away from the hospital. Part of this is definitely just who I am, but part of this must stem from those experiences. I am so afraid something will happen, and I will not be there.
And with Kiran, I HAVE to be there. I would never forgive myself if I wasn’t.
Recognizing the reasons definitely won’t change my behavior, but it is good I understand where this piece of me comes from. I hope I never have to say goodbye to Kiran, but you better believe, if I have any control at all (which my life has shown I rarely do), I will be right there with him if I do.