The other night, I was digging around in my laundry basket full of papers to sort through, and I found a copy of the remarks Elli’s cardiologist made at her service. He very thoughtfully sent us a copy for her scrapbook. I typed them out so I’d have a backup just in case I ever lose that paper!Well, also so everyone who wasn’t able to attend the service could read his lovely tribute to my daughter’s spirit and pluck. He also shared a few things that we didn’t know. We are so thankful to him for his willingness to share these words with us at Elli’s service.
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10/23/08
My name is ____ and I’m Elli’s cardiologist. I am just one of a huge team of health professionals at ____ Children’s Hospital that were needed to take care of Elli and in turn were therefore touched by her life.
Elli was a famous patient at Children’s. She was born with very complex and quite rare heart disease. In part, that in itself made her famous. Her fame was also because of the many people that came to know her as they cared for her. But most of all, her fame is due to her indomitable spirit. Elli was a fighter. In my 23 years of pediatric cardiology experience, no other patient has undergone the number of heart surgeries and catheterizations that Elli had. Yet time after time, surgery after surgery, she would make it through to fight another day.
As I reach the latter part of my career, I’m finding that the most rewarding part is watching babies with critical heart conditions grow up into children, teenagers, and adults with distinct and interesting personalities and life choices and achievements. It’s so rewarding to see a critically ill fragile baby with a life-threatening heart problem do well and grow up!
With Elli, over her 8 and a half years, it was no different. I got to watch her grow up as I cared for her. And sure enough, she developed her own distinct personality, interests, and achievements. I just learned tonight of another aspect of her personality that I didn’t know about – her love of McDonald’s French fries!! Come on Scott and Joy, as Elli’s cardiologist, I have to protest!

For Elli, playing sports, cheerleading, going to college, getting a job are no longer possibilities. But Elli’s accomplishments are perhaps far greater than these. Here’s just one. It involves communication… the ability to communicate with others. For us, communicating is something that we unfortunately take for granted every day… for Elli it was quite an achievement. Elli’s medical conditions prohibited her from communicating in the ways you and I communicate. But through the help of Children’s Hospital, a device was created and used by Elli so that she could communicate with us. And on her recent visits to me, using her special communication device, she not only said hello to me, she also told me what she liked and thanked me and…said goodbye to me.
Through the loss of precious people in my life, I’ve learned that although there is profound loss that hurts so bad, these loved ones are never permanently lost to us. They continue to live by dwelling in us and acting through us. And Elli will continue to live in and through many of us. For Joy and Scott, perhaps Elli will live through them not in her passing but in the way she survived and achieved great things even in the face of tremendous adversity. For Elli’s brother, her spirit of survival and achievement will be passed through Joy and Scott as he grows, thrives, and achieves despite battling his own heart problem. And for Elli’s cardiologist – for me, Elli will continue to live through me as I care for future children with heart problems and try to instill in them Elli’s spirit that anything is possible even with great odds.
The heart is the most special organ of the body. It has its vital physical function – pumping oxygen and nutrients to the body. But it is also the home of our spirit and soul. With Elli, even though her physical heart was broken and often under repair, she showed those whom she touched that her spiritual heart was very much alive and healthy. It is that spiritual heart of Elli that will continue to live through us.