Wednesday, November 10, 2010


This morning I drove down to Children's Hospital to participate in a training for med students. As I got out of the car, walking towards the hospital, it hit me - I was here a year ago for sure. It was the beginning of Jacob's long hospital stay, day 11 out of 50 to be exact. The air was chilly this morning, but I did feel a chill through my whole body as I realized that it was today a year ago that we put Jacob in his medicine coma to stop his seizures. It felt unreal to be simply walking down the path outside the garage knowing that Jacob was safe at home. Memories coming back from a year ago.
I felt pretty comfortable about today's training topic - "deliver difficult news to patients and parents". I was going to be on a panel with one neurologist, one child life therapist, and one social worker, and me representing the parent's perspective.
We talked to the students for two whole hours. We all gave our perspectives on how to deliver difficult news, and it was interesting that we all hit the same points over and over again - honesty, trust, respect. I did love that the neurologist mentioned kindness. That just gave me hope about the importance of the personal side of a doctor.
The 35 students in the room were so engaged. Some cried. Some nodded. Some asked questions. Some just had to squeeze my hand afterwards. Some asked difficult questions. Some asked really personal, difficult questions.
I immediately said yes to do this training, since I unfortunately have more experiences in this area than I want to. Interestingly enough, most of them ended on a positive note due to the doctors Jacob has. What I didn't expect from today's training is how it impacted me. How I had a really hard time describing the care conference where Dr. E brought up hospice for Jacob. How I suddenly felt tears coming down my cheeks as I listened to the others' stories that could have been my own.
Tears come to me in the car. They have always done that. Maybe because it's sometimes the only place where I am alone during really rough emotional times with Jacob. The tears came today on the way home from the training. They were tears of sadness for the horrible disease Jacob and we are dealing with, there were tears of happiness and thankfulness that we still have our fighter with us, and there were tears for all parents who have lost a child.
Love, Maria.

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