A few years ago, I was doing some grocery shopping when I was stopped in the coffee aisle by a woman with a desperate look on her face. I expected her to ask for help finding something, but as I looked in her cart I saw a young child in the seat with a familiar face. I knew exactly what she wanted.
Her young son had a cleft lip just like mine. I knew right then we were in for an awkward exchange. So, I gave my best welcoming expression and she began to speak. She started off saying that she was so surprised to see someone who looked like her son. She could not help herself but follow me until she got up the courage to approach.
I cannot tell you how many times this has happened to me. At grocery stores, barbeques, summertime festivals, pretty much anywhere people gather with others they may not know. For a long time, I viewed these approaches as intrusive and uncomfortable. I’d think – “Why should I tell you anything at all about myself or what I’ve gone through? That’s too personal! I don’t even know who you are!”
But as the years have gone on, my view of these encounters has changed. What I once saw as an invasion of my privacy has now shifted to a place of compassion and service. All the times I have been approached by strangers genuinely looking for information (and not just to gawk or get the sordid details of what happened to me) has been by parents of a child with either a clef lip, palate, or both.
Shared Familiar Experience..
These parents are desperate for not only whatever information I can give them, but are looking for the comfort that comes through shared experiences. I know what living with a facial deformity is like. For parents of childen with a clft lip and palate, it can be difficult to find others to share what it feels like to be born this way.
What are the questions these parents ask? Very few ask about the technical nuts and bolts of surgeries, speech therapy and the like. There are many resources out there that cover all of that. If you need support in this area, check out this link to the American Cleft Palate and Craniofacial Association.
No, these parents ask questions with one common thread. They want to know that their child is going to be alright. They want to know the emotional toll that living with this type of birth defect can have on their children. Parents want to learn what they can do to help mitigate the negative impacts to their child’s emotional health.
It’s a heavy question, and as someone who has lived through it, I am careful with my response. However, my answer is a simple but nevertheless impactful: “Your child is going to be alright. You are going to be alright. Just be sure you are always honest.”
Do not lie to your child. There is a lot of pain – both physical and emotional – they will go through because of having this type of birth defect. The last thing you want to do is lie and tell them that nothing is ever going to cause them pain because of their cleft lip and palate.
My mother followed this rule as she supported me through all the surgeries, dentist appointments, etc. She never lied about the pain. Never lied about the procedures the doctors and nurses would have to do. She never lied about the types of kids I would encounter in school.
My mother was honest and direct about all of it, and that has made all the difference. I knew what I was getting into in just about every situation and could arm myself with the tools I needed to get through. If she had lied and said that no one would ever tease me because I am a nice person on the inside, that would have resulted in many horrible experiences, and would have simply not been true.
Think to your own life. How many times has lying to yourself ever worked out? To avoid pain human beings will do just about anything, but it rarely ever pays off. Getting comfortable being uncomfortable is a life skill. Being honest with yourself is the first step. Check out a past blog post on getting comfortable being uncomfortable.
This mother and I continued our conversation for a little while longer, and as it came to an end I wished her and her son well. She thanked me for my time and apologized for bothering me. I told her it was not a bother at all. She turned her cart around and as I waved goodbye to her and her son, I repeated Rule#1. I told her that her son was going to be alright. She was going to be alright. Just remember to always be honest.
Want to stay connected with all things Dragonfly Paradigm? Click the button below to subscribe to the community!