By Kirby Vigneau-Murphy
Our son Owen is a very active three-year-old who just happened to be born with a unilateral cleft lip and palate. The youngest of our four children, he is also our only child born with a cleft lip and palate. I remember that even though we were experienced parents, we were very nervous about all the surgeries he would have to undergo when he was a baby. Throughout the first year, we would go to Boston Children’s Hospital to meet with Dr. Mulliken and Dotty MacDonald. Their whole team supported us greatly throughout the difficult first year. It felt like such a victory to make it through each surgery as well as all the baby milestones like holding his head up and crawling. There was so much information to take in and I think both my husband Joe and I just wanted to be the best parents we could for Owen and our other kids.
Every year the Foundation for Faces of Children hosts events for families to meet, connect, and share their experiences and offer support to one another. In the spring of 2014, we attended the Lowell Spinners game and had a great family day with FFC. The kids loved it and enjoyed running the bases on the field. A couple weeks later, our family attended the 2014 FFC Scholarship Awards reception. It was a very special night because it was also the retirement celebration for Dotty MacDonald. While we were waiting for the ceremony to start we met the Chaves family. They came right up to us to introduce themselves, mentioning that they recognized us from the Lowell Spinners game. Their daughter Olivia shared with us that she had also been born with a cleft lip and palate. Olivia, her parents Joe and Janice and her brother Eric discussed with us topics ranging from the different surgeries, dental care, school and any social impacts having the surgeries might cause. Joe and Janice gave us advice on how to best advocate for Owen based on their experience with Olivia. They were so candid and honest in answering our many questions. It was great to be able to ask Olivia — a junior in High School — what it was like to grow up with a craniofacial difference. Her insight put Joe and me at ease with all the “what ifs” parents with a child with a craniofacial difference may have. It was reassuring to meet a family that had gone on a similar journey to what our family would be facing for the next eighteen years or so.
We saw the Chaves family again at the 2014 Paces for Faces Walk and Family Picnic. It was great seeing them and reconnecting. Just like the first time we had met, we had questions and concerns we were able to ask Olivia and her family. Again, it put our minds at ease. It was a great day for Owen and our other children enjoyed seeing Olivia and her brother Eric.
This past spring I was delighted to see that Olivia was going to receive the 2015 Barbara Seltzer Memorial Scholarship. I immediately emailed her that we would be at the awards ceremony to congratulate her. It was great seeing her and her family at the FFC Scholarship Awards Night. We were able to thank her for sharing her story with us and we wished her good luck at the University of Vermont. The highlight of Owen’s night was riding up and down on the elevator with Olivia and Eric. We were even able to get some great pictures of Owen and Olivia.
Our family feels very fortunate to have met the Chaves family through an FFC event. We appreciate the FFC for coordinating the different events for families. We are so impressed at their commitment to not only care for the medical needs of their young patients, but also the emotional needs of the children and their families. It is wonderful that they want to bring families together to support one another. It has certainly helped our family to realize that we are not facing the journey with Owen alone. I know if I ever have any questions in the future, not only can I call the team at Children’s Hospital, but I can also contact Olivia and her family. I hope that other families will continue to attend and support the events FFC hosts and to forge new and lasting friendships. You never know who you are going to meet at an event and just how much sharing your experience could help another family.