When Lisa Lori’s first son, Zack (now 18) was born, the doctors told her he had a rare condition, facial paralysis, which would impact his ability to not only move his face (including the capacity to form a smile), but also to eat and speak properly. Her other sons, Luke (now 16) and Griffin (15) were also born with the condition. Lisa’s story from the time of Zack’s diagnosis until today is a true testament to the strength of a mother. Determined to give her children the chance to engage fully in life, Lisa found a Toronto surgeon who performed over 20 surgeries in total on her boys, who have had dramatic improvement over the years. Fueled by the hope of what she had seen firsthand, Lori is now giving back to other children by supporting Operation Smile, an international charity providing surgery to both kids and young adults who have facial anomalies like cleft palates. The Local Moms Network spoke with Lori, who owns the chic Perfect Provenance boutique and café in Greenwich, CT, about her amazing story and her passion for Operation Smile, including her Three Little Bears initiative which has already raised an astounding $2.75 million. (To shop the Operation Smile collection, click here.)
Can you briefly describe your family story and how Operation Smile came to be?
My children were all born with a rare condition called facial paralysis. The reasons for this are complicated but our situation was completely unique: they couldn’t close their mouths, smile, had difficulty with eating and speech. For years, we searched for answers with little help until we found a surgeon who had pioneered a transplant surgery helping children like ours to smile. Over four years, our children had 8 transplant surgeries. He is also a medical volunteer for Operation Smile, we were so grateful to him, we wanted to thank him for changing our life and in 2010 we hosted our first fundraiser at our home for Operation Smile. From there, the Three Little Bears named after my children were born which gives a child going into surgery on a medical mission a bear for a $240 donation and a donor gets a bear. Today we have raised more than $2.75 million thru our bears, fundraisers, Smile Greenwich annually and our Smile Collection.
That’s so amazing. Why is a smile so essential to a full life?
Smiles make emotional connections to those around you, show happiness. Smiles just bring joy. Smiling is just a big part of communication between human beings and without it, people can feel isolating.
How are your boys doing now?
Our sons are doing wonderfully. My oldest is going to Northwestern in the fall, they have overcome enormous personal and physical challenges and lead completely normal lives. I couldn’t be more proud of them.
What a fantastic story. What would you tell yourself if you could go back to that time?
Children are incredibly resilient—I spent so many hours worrying about their futures and well-being. I would tell myself to be patient. While every surgery, every moment is imprinted on my brain, there is much they don’t remember and I am so thankful for that. They each have their own challenges and have handled it differently but it has also informed their lives in so many important ways.
That is great advice for all parents. What would you tell other moms going through tough medical times with their kids?
To keep focusing on the small moments—ice cream, dancing, sunshine. Children just want to enjoy the small moments in life…adults worry about so much more and it can overwhelm you. I learned after many years to focus on the randomness in life, no one deserves more heartache than anyone else but some people just have a harder time. They just do. We tried to focus on the fact that we still had a choice whether to be happy or sad with our challenges. It helped me get through many bad times when I wasn’t sure I could handle it. We prioritized finding relief in vacations, family get togethers and positive experiences.
What else got you through?
My husband and I both grew up in big Italian families. We saw our parents deal with a variety of different children, stresses and challenges. We could not have known what we would face but it did give us a strong foundation. We made a commitment to each other early on when things started to unfold, to our marriage—that if we tackled things together and supported each other, our children would thrive. So many marriages fall apart when faced with children disabilities but I believe our strong commitment to each other and our kids got us through it.
Your boys have gone on several missions with you – what is that like, helping them give back to other kids?
It has been a wonderful experience; no matter what you are facing, there is someone in the world who faces more. It gave them a wonderful chance to see outside their own lives and help others. Giving back is always wonderful but because of their unique experience, they felt particularly sensitive to the needs of other families.
Where do you hope to go from here?
I just want to continue to open up people’s minds to the needs of other human beings. I am hoping to continue to grow our Smile Greenwich event, raise more money for surgeries and speak out about misfortune and how we should be trying to support those in need instead of turning away.
What has surprised you on this journey?
The incredible strength of my family.
About Operation Smile: Operation Smile has provided hundreds of thousands of safe surgeries for those born with cleft lip, cleft palate or other facial conditions. With more than three decades of expertise, Operation Smile creates solutions that deliver free surgery to people where it’s needed most. As one of the largest medical volunteer- based nonprofits, Operation Smile has mobilized thousands of medical volunteers from a wide range of medical specialties from more than 80 countries. Operation Smile engages public-private partnerships to advance health care delivery, train local medical professionals to provide surgical care for patients in their communities, donate crucial medical equipment and supplies, and increase access to surgical care so that everyone living with cleft is treated. Visit www.operationsmile.org, find us on Facebook or follow us on Twitter.
To shop the Operation Smile collection, click here.
Want to know more about Lisa and Operation Smile? Click here.
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