Joe & I are notoriously bad at downplaying pretty much all things in life – the seriousness of our kids surgeries, the responsibility of our jobs, the amount of juggling it requires to keep things moving. This means that we typically talk less about the “things” in our life; we’d never want anyone to think we were tooting our own horn! While this approach has worked for us in the past, recently I have given it a bit more thought and the negative impact it might have.
As most of you know, both of our kiddo’s just went through major surgery. Leading up to the big events, we didn’t talk about it all that much and when asked we simply responded, “they’ll be fine.” Now that we’re past both surgeries, the kids are in fact, fine! However, due to the lack of details shared, those who don’t experience major events such as these just might start to think that it’s easy. I’m okay with people thinking it’s easy on us, but I don’t want to discredit what our kids have endured!
The other day a friend asked if this would be Ella’s last surgery. The simple answer is no, but the real answer is that a cleft lip & palate means the possibility of numerous surgeries as she continues to grow. Most people thought that we would have the first two surgeries in infancy and then move onto living our “normal” life. They don’t realize all of the other things impacted by her defect – speech, hearing, eating, dental, emotional – and that’s the best case scenario!
For this reason, we started the Cleft Awareness Foundation to create a support network for Ella and ourselves and to educate those around us about what a cleft lip and palate means. We’ve done a great job at the first portion of that goal. We’ve built a network of 3,500 + like-minded people across the world to share stories, get advice and lean on. However our natural desire to downplay things has caused a dilemma and forced us to fall short in our second goal.
A lot of important people in our life don’t even know about Cleft Awareness! Over the past few years I have shared a lot of helpful things to better educate the cleft community, but I forgot to share that same information with the people closest to Ella! For that reason, I am going to go against the grain and get in a shameless plug —if you are interested in learning more about cleft lip & palate, please follow us on Facebook by clicking here! As a bonus, you’ll get to see a lot of pictures of other strong & beautiful kiddo’s who experience the same things everyday!