Sunday, February 11, 2018


Dear Jacob,

I am sitting on a plane leaving sunny Los Angeles behind. Tomorrow morning, I wake up in London to fly on to Berlin. It was a hectic week. Work was crazy busy. Your dad was out of town, and I realize how much he does around the house and driving your sister all the places she needs and wants to go. We’re gearing up for our silent auction dinner, and there are little details to take care of each day. I was also gearing up to leave town for two weeks to travel the world.

In the middle of this crazy busy week, I got to tell your story. Not once, several times. I got reminded of the power of storytelling. Storytelling is far more powerful than graphics and statistics. Storytelling paints a picture of why we do things. Stories make people connect. Stories make the world make sense.

As you know, I have been passionately involved with Children’s patient safety work for years now. Five years ago, the hospital re-branded and reinforced their safety program. They made a commitment to zero patient errors. It’s not a small undertake considering the human process behind healthcare, and the thousands of processes each healthcare provider follows each hour of their day. We have lived the healthcare system. We know it’s easy for a human error to sneak in. No one goes in to work thinking they are going to make a mistake, but mistakes and errors do happen. I make them too. Each and every day. I learn from them, and I hope to do a little better the following day.

As part of the patient safety program, we got to tell our story. We were the family featured as part of the Target Zero program. We were the family behind the data, statistics, and graphics. We gave the face of what it meant to have a child at Children’s that we didn’t dare to leave alone in the care of the hospital staff due to the fear that something would go wrong. We were the extra eyes and ears of you, Jacob. The video turned out to be powerful, and has been watched by all employees at Children’s. Each new employee is still watching the video as part of their new employee orientation.

This week, I got to be part of celebrating the five year’s mark of the hospital’s patient safety program and the successes the hospital has achieved in this time. I got to reflect on you and the video that had such an impact on the staff. I started out by asking who remembered the video, and I had a room full of several hundred employees who raised their hands. It was such a testament to you, and the impact you had and continue to have on Children’s. As the Chief Quality Officer said, they continue to cherish you in their daily work. It made my heart complete. It made me understand the power of your life, of your story, Jacob. It made me a very proud mom.

Two days later I was back at Children’s again for Alice 105.9 Radiothon raising funds for Children’s during 24 hours. Joakim and I had recorded your story with the radio station in advance. I now got to hear your end of life story on the radio for the first time, and as I was sitting in the Atrium with a big heavy headset on my head across from Steve from Alice 105.9 and tears were slowly coming down my cheeks. Steve gave me a Kleenex and smiled encouragingly to me. After the montage, he interviewed me. I got to tell all listeners about the fantastic kid you were, and how you taught me to live in the moment. How Children’s it’s still a happy place despite you not being part of it anymore. 

As Steve was interviewing me, one of the hospital’s board member was moved by your story and decided to triple all donations coming in for the rest of the hour. I once again got to witness the power of your story. I got to witness what moves someone to triple all donations by simply hearing about you, Jacob. It was very powerful. That I got to have Sarah, my dearest friend and partner in crime Heather, and your fabulous nurse Ana by my side this afternoon was heartwarming. Text messages and messages on social media from friends listening to your story made me very happy and teary eyed. I felt very supported.

Friday morning, the radio station ran your story again. I had to step away in the middle of a meeting to listen to it one more time. Tears filled both Joakim and my eyes as we were listening to your story together in our kitchen. Joakim gave me a kiss as the story ended. No words, just a message of love and knowing we were the luckiest two people in the world being your parents for ten years. We would have done it no other way. We are the luckiest people in the world. 

Once again an anonymous donor was touched by your story, and decided to triple everyone’s donations for one hour. We just told your story, we didn’t make anything up. Your story touches hearts and people everywhere, and continues to do so. It makes me so very proud knowing I am your lucky mom.

In the middle of busyness this week, I decided to become a story teller. Your story is the most powerful story of all stories of my life, but there are so many more. I decided to use storytelling in my work and outside of work to connect with people. To be real in life, and to never, ever forget the legacy you have left behind. Your story is worth telling each and every day. Thanks for giving me yet a parting gift, the gift of storytelling.

Jacob, I love you to the moon and back always,


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