My wife Kristen and I have three children all born with complete unilateral cleft lip and palate; two daughters ages 21 and 20 and a son who is 12. Since the very beginning, over 20 years ago, we have relied on the ACPA for information and support.
When our oldest daughter Sarah was born, we were lucky enough to get connected to a local support group that provided us with pamphlets from the Cleft Palate Foundation, which at the time was ACPA’s outreach arm. We did not really know anything about cleft lip and palate, and of course once your baby is born you need to learn very fast. We were juggling feeding issues, oral appliances and planning surgeries, all while dealing with the usual challenges of first-time parents. There was a lot of stress but we just tried to take things one day at a time.
Fifteen months later our second daughter Emily was born with an almost identical cleft, just on the other side. If we thought things were crazy before it only got even crazier, as now we were juggling procedures for both girls and it seemed like we always had a surgery on the calendar. And of course, many, many visits to the ENT and speech therapist.
Eight years after Emily was born along came our son Daniel. We discovered he also had a cleft, this time through a prenatal ultrasound. It was hard to bear and very frustrating, but at least we knew what lay ahead. Daniel is doing great, playing tons of sports, and getting ready to have his gumline bone graft surgery.
Today all three of our children are thriving. Because all of our children were born with cleft, it is really the only experience we know. We work hard to teach our children that their cleft is not a handicap but is just part of who they are. Our kids have an amazing attitude toward their cleft. It is just a part of life and they do not let it get in the way. My wife and I have learned a great deal about courage and fortitude from our children.
While juggling all of the crazy demands that life throws at us, we also try to give back. We have visited other new parents in the hospital to talk about the path ahead of them. We are involved with ACPA as a way to give back and to ensure that other families like ours have access to the best possible care. Our financial support of ACPA is important to us. We give monthly because that makes it easier to hit a target amount without having to write one big check. For anyone affected by cleft lip and palate there is a tremendous opportunity to help others by supporting the ACPA with a gift
We know that right now, somewhere, a family with a newborn is asking the same questions and experiencing the same anxiety we felt 21 years ago. ACPA is going to help that family just like they helped us, and we are proud to be a part of that.