GOING DOWN MEMORY LANE

This week I got to participate in giving the training "How to give difficult news" to med students at CU. It is from the perspective of a Neurologist, a Child Life Therapist, one Dad, and one Mom. I was the Mom.

Training people is something I do for a living. It is something that gives me joy. It is something that matters to me. So, when I can also do it outside my work, I will jump on the opportunity, especially when the topic is close to my heart.

I am ok to talk about the times we were the receiver of difficult news. I can separate myself from the emotions associated with the topic. I sometimes see that a student gasps in their seat or removes a tear from a wet eye, but I am ok when I am talking. I am ok to share our times of difficult news.

As I was done with my part, I was sitting in the back of the classroom, since there were two speakers following after me. As I was sitting down, hearing more stories about difficult news, I felt emotionally tired. We haven't had any end of life discussions in the last year, but as I was talking about the doctor who told us that there was nothing more to do for Jacob when he was 4 months old, or the pentobarb coma, or Jacob's crash when we tried the ketogenic diet, or when Jacob had sepsis, pneumonia, and pseudomonas all at the same time, and needing a tube to breathe for him, I was definitely going down memory lane. We have had end of life discussions, but we're still here. Now sharing them with med students, hoping that some of it will stick with them as they venture on their medical careers.

The Child Life Therapist ended the 2 hours training. I always enjoy listening to her, so I made sure I had a comfortable seat in the not so comfortable chair. And this time around, she had a story that hit my heart.

It was a Friday afternoon. The son relapsed from his cancer for the 6th time. The mother was devastated, not only for her son's condition, but also how she would communicate this to her daughter. Her daughter and her were just about to leave for a mom-daughter weekend, and it was now cancelled. It was agreed that the dad and the Child Life Therapist were going to share the news with the daughter. After they had shared the news, the daughter wanted to talk to the Child Life Therapist on her own.

"Come over and sit with me", she said. "Hold my hand", she said. And as tears were rolling down the cheeks of this 7-year old girl she told the therapist that she wanted her brother to die. The Child Life Therapist wondered, if she knew what that truly meant, and the girl explained. She fully understood the meaning of her brother's death. She was just so tired of not having her parents around, never being home, always having to spend time with grandma and friends, never gotten to do any activities after school since noone could drive her. Her dream was to do Tae Kwon Do. The Child Life Therapist said that she would have to share some of this information with her parents, if she was going to be able to help her. She was fine with that. The Child Life Therapist got permission by the parents to call around for a Tae Kwon Do class for their daughter as long as she could also find someone to drive her to class. Within an hour, the little girl was signed up for Tae Kwon do lessons twice a week, and a student needing volunteer hours was going to drive her! The mom and daughter didn't get a weekend away this time around, but for the girl a dream had come true.

As I was sitting listening to this story, tears were coming down my cheeks. This story hit home with me, it reminded me of our Sarah. As I listened to the words of this daughter, I completely understood Sarah. How it is a difference to be told to stay with friends, not because you want to, but because you have to. That slight difference, even if it is one of your closest friends you get to hang out with, but you know it is because your parents need to be with your brother. There is no choice.

Sarah is a homebody. She loves to be home, preferably with the three of us. That is her safety. That's all she needs.

I can't change our story. It is what it is. And every day I am trying to divide my time between my two kids, and give each of them what they need.

And once in a while it is good to go down memory lane. As I was leaving the classroom, I had good perspective. Rather than hurrying home to chores and work, I decided that I would take the elevator up once more and make sure my friend was doing ok wit her son being in the hospital. I decided that I would take the time to chat and give our favorite nurse a big hug before heading back home. I decided that Jacob's home nurse needed a peppermint mocha that afternoon, I called my neighbor back to ask how she and her family were doing. And Sarah and I decided to go pottery painting this weekend, just the two of us.

Perspective is good, especially perspective of what truly matters in life.

Love,

Maria.