Despite ongoing challenges through the years, Zoe continued to surprise and amaze me with the wonder of her. She stopped me in my tracks and took my breath away with the Joy of just watching be her herself. It was a Joy that I could not contain and I knew I must share somehow. Then, in 2017 talkshow host Jimmy Kimmel announced his own son’s heart defects and my inbox was flooded with clips from his monologue. Watching his story I knew it was time to write. So, finally, I began.

A week later at the dinner table

My oldest old son shared that the 7th graders were studying anatomy and had their unit on hearts that day. He spoke up to tell about his amazing sister’s story. Again as he was speaking I had that “NOW” feeling in my gut. I took a deep breath and emailed his teacher. Before I knew it Monday morning had arrived and I was standing in front of my first class of 7th graders with a slide show chock full of images from Zoe’s experiences. For each class of the day I showed them the actual drawings her cardiologist drew of her heart to explain her defects to us. I showed them her hospital room and all the carts of medications she was hooked up to, I told them about triumph.

I was relieved that only one kid fainted

And I thought I ready for the natural 12yr old curiosity during the Q&A portion of the day. I was not at all prepared for what actually happened. A girl in 2nd period raised her hand and said, very timidly, “So.. I have a heart murmur, what’s wrong with me? Nobody ever really explained it.” WOW. There were 3 of those that day. Nearly the same question. It was an enormous privilege to tell them how special they are and watch the wonder in their eyes as they understood this piece of themselves for the first time.

And that’s when I knew the direction my book was going to take.

I wanted to inspire these kids, and give them confidence, and allow them to celebrate their unique song. I wanted them to know that each of our hearts is unique, both anatomically and metaphorically, and THAT is reason to celebrate. In writing our story my hope was that any child and any caregiver would be able to read this book together and really celebrate their own story and be proud of their uniqueness AND their victory.

Heartsong is Available on Amazon. Click Here to get your own copy!

Heartsong Features!

With the release of the book, We had both a TV news and Newspaper interview that both coincided with the timing of Portlands American Heart Association Walk! Zoe was featured as a survivor of CHD and had a cardboard cutout with her story at the waterfront downtown amidst the crowds of people who came to support heart health!

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An Open Letter to Jimmy Kimmel

Thank you, Mr. Kimmel.

My daughter was born April 23rd 2011, on a sunny afternoon here in Portland, OR. A nurse noticed she was having trouble breathing and she was sent to the NICU for the first week of her life as the doctors thought she was getting stronger. They talked about sending her home. On her 8th day in the NICU she crashed. She was in extreme duress. They finally looked into her heart, and found her defects; A minor Atrial Septal Defect, a small valve, an Interrupted Aortic Arch, and a 10mm Ventricular Septal Defect. She had surgery at 11 days old. She is an amazing 6 yr old now, with spunk, enthusiasm, and a BEST.DAY.EVER attitude every day. We named her without any of this knowledge. Her name is Zoe Serafina, which means Life Angel. 

Naturally everyone I know started sending me your monologue in May when you announced Billy’s condition. I cried with you and welcomed you to our club of Heart Parents, and something inside me finally clicked. People have been telling me I should write a book for years, but always too exhausted from life I put it off. Now I knew this was the time. According to my computer, Tuesday May 2nd 2017 at 12:30 pm I opened a new document to begin. It was, at first, a few mumbling sentences that really had no direction, but I kept at it. 

Then on Thursday the 11th of May at the dinner table, my 12 yr old son said, “Hey guess what we talked about in science today? HEARTS!” The 7th graders were studying anatomy and had their unit on hearts that day and he spoke up to tell about his amazing sister and her heart defects (which in 7th grade boy language probably went something like “HEY! My sister had a giant hole in her heart when she was born. She’s fine now.”) But again as he was recounting this at dinner I had that feeling in my gut. NOW! it said. So I asked him if their lessons on the heart were done or if maybe his teacher might like to know more about heart defects. He shrugged his shoulders in a typical 12yr old move and said, “You could email her…”. So I did. I told her I would be happy to come and speak about it if she would like. She immediately called me and invited me to speak to all the 7th grade classes for the entire day that coming Monday. I had the entire period of each class for my presentation. Well, that was a whirlwind weekend of creating a presentation suitable for 7th graders, chock full of images from Zoe’s experiences. I don’t know how you stand in front of America every day and manage to utter complete sentences but that was quite a feat for me! I showed them the actual drawings her cardiologist drew of her heart to explain her defects to us. I showed them her hospital room and all the medications she was hooked up to, I told them about triumph. Then I asked if there were any questions. I was ready for 7th grade nonsense (which, naturally, there were a few of- but only ONE kid fainted in 6th period) so I was extremely surprised when the girl in 2nd period said so very timidly “So.. I have a heart murmur, what’s wrong with me? Nobody ever really explained it.”

Wow. There were 3 of those that day. Nearly the same question. I thought it was an enormous privilege to tell them what I knew and watch the wonder in their eyes as they understood this piece of themselves for the first time. And that’s when I knew what direction my book was going. I wanted to inspire these kids, and give them confidence, and let them know that their special is good.

The writing came easy after that. The illustrations were harder as I wanted any child and any caregiver to be able to read this book together and not be caught up in any distraction of the images, but to really own their story and be proud of their uniqueness AND their victory. 

I’m finally ready to share this, and I wanted you to have a copy to read with Billy. He should never have any doubt that he is worth everything it takes to be him. I know you feel the same. I’m sending a copy to the address I found for your show, but I’m not sure it will get to you. I hoped the social media world might help my message get to you. 

Thank you for sharing your story and giving me that final push to get this out of myself for all these kids to share. 

In gratitude and Excruciating JOY,

Noelle Bonn