My family was first introduced to Ann & Robert H Lurie Children’s Hospital back in June 2012, just two weeks after the new location in downtown Chicago opened. I like to think my triplets ‘christened’ the NICU – they were the first set of triplets there I believe. We spent the better part of the next five months in the hospital with daily & lengthy visits becoming our norm. Those months were very bumpy but Benjamin was the last one to come home late November. After that, we continued to visit regularly for followups, doctor visits, clinics, surgeries, ER visits, illnesses and more. However, the last time we were there was May 2, 2016, the night Benjamin died in their PICU.
I knew that I wanted to be able to give back to the hospital in some way. It had been on my mind since we established Ben Smiles Memorial Foundation in spring 2017. We’d gotten so much from the hospital, I really felt strongly I wanted to return the favor – I just didn’t know how. We couldn’t afford a large financial donation, even with the generous contributions into the foundation…. Not with my primary mission of buying adapted toys for kids and spreading smiles.
So when Ben’s Adventures published right around Benjamin’s ‘death date’, I decided a special way to honor him and to support Lurie would be to donate a book for every book purchased during the month. Well, I did that – and was able to donate 50 signed books to be used and given to their patients.
In working through the details of the promotion and donation, I was invited to be a guest on their weekly “Storytime with Dot” in-hospital broadcast. Of course, I said YES – but was nervous to step back into the hospital since the last time I had been was two years earlier. The child life contact Nicole suggested I come down for a visit to break the ice, meet the team, see the studio, and get this first visit back behind me.
Initially I wasn’t sure it was needed – but quickly realized it was a good idea. It was an odd feeling being back there after more than two years, so very familiar but at the same time so foreign. From what I could tell, not much had changed – I used the same tricks to navigate the parking garage; there were familiar faces at the front desk and in the cafeteria; my kids pushed the same buttons in the elevator to make the same sounds they did on so many other visits; we had to stop and peer into the very cool & colorful fish tank that greets visitors at the entrance. It was the same, but everything in my (our) life had changed.
Being able to be there with the book and sharing it with the kids seemed like a full circle … a nice closure or next chapter – Benjamin spent the first few months of life at the hospital, his life ended in this hospital and here I was sharing the next phase of Ben with the hospital, representing him and sharing our new story.
Everyone was so welcoming and curious; the show began and I chatted with Dot about the story and why I wrote the book. We talked a bit about the illustrations and how they came about. I read the book to those in the studio and those tuning in from their hospital rooms. Dot took a couple of calls during the show. She asked kids about Ben’s next adventures and they offered suggestions for the next book in the series. Outer space. On Mars. Under the sea. The fun list of adventures goes on and everyone had something to share. Each child got a signed copy of the book.
At the end of the hour-long show, kids were dancing around, waving the book, smiling and laughing. That brought tears to my eyes. To see that each one of these kids now had a piece of Ben’s first story. In general now, there is a constant sadness. But moments like these remind me that I CAN find joy in this new life.