Cleft Lip and Palate · Medical/Dental · Self

Service and Perspective, the Orlando, FL Edition

Service work is so important to me. I was born with cleft lip and palate that required many surgeries, countless procedures, loads of appointments, and don’t forget the orthodontic interventions as well. I had braces twice, one set for 12 years. I do not know how many surgeries I have had. I am never sure to count the oral surgery appointments as surgeries. I guess I do. What does all this have to go with service work? I feel compelled to give back to the medical community that gave me so much: the craniofacial community (way to bury the lead, sister!)

I just came back from a trip to Orlando, FL to support an organization out of Texas called the Children’s Craniofacial Association. It was an emotional experience. I met parents. I spoke with kids, and young adults. The organization contacted me back in October to come to their annual retreat. I presented for them in June of 2010. Both this year’s retreat and the one in 2010 were nothing short of amazing. These young adults are strong. They are kind, innocent, but more than anything willing to laugh, live, and love despite what life has thrown their way. And boy, has life thrown truckloads their way. Look up Crouzon’s Syndrome. Look up Trecher Collins. Look up Apert’s and Pfeiffer Syndrome and you will see the cards these kids were dealt. Go on, do it. Now think about it, really think about it. Think about walking around in their shoes for just one day to experience the bullying, the whispering, the anger, the sadness, and yes, even the joy. Yes, the attendees of this retreat were quite happy. They made lots of noise. I am told they nearly broke the ballroom dance floor during the dinner dance on Saturday night. I was not there for the dinner.

How could I not give back? I was only affected with cleft lip and palate. These young adults and kids were born with cleft lip and palates, and then some additional craniofacial syndromes.

Parents, if you are reading this, and your kid is healthy, then you are very blessed. If you think your job as a parent is hard. It is. But it is nothing compared to what these parents and families have been through day to day, year to year. If you whine about feeding issues, and breastfeeding; it is okay. Remember, it is a privilege to voice your emotions. Just keep in mind other children have failure to thrive issues and some are unable to breathe. Google infant feeding tube, or pediatric tracheotomy, and get the needed perspective.

Women and men out there that do not like their appearance, your weight, nose, your breast, calf sizes, and other features, take a second and be grateful that any improvements you wish to make are by choice, not by necessity. I am just as guilty as you as far as concern about my weight. Walking and talking with the participants in this retreat puts everything into perspective. They are, for once, among their peers, when they are together on retreat. And you  better believe they are not bullied for their weight, or breast size. If ever a young person says to me that they want to get a nose job, or points out some small difference to their appearance that the naked eye cannot see, I tell them to go to their nearest children’s hospital and sit in the lobby for half an hour. That puts everything in perspective. I have done it, too. It works.

It is hard to believe in God when surrounded by children and young adults with these disorders and syndromes. Yet, I do. I see that God chose the right parents, parents that could handle the work involved in raising children with craniofacial syndromes. The families are nothing short of saints. If it were not for my Mom and Dad, I do not know how I would have turned out. If I were one bassinet over, how different would my life be today? I believe dramatically different. It is true what they say, God will give you only what you can handle. These parents and families were specifically and specially chosen to serve the world through caring for their kids.

These parents can go the extra mile, or miles. I asked during one of the sessions for parents, what they do for self-care. I didn’t get too many definitive answers. To be honest with you, I did not expect any of them to have a self-care routine. Everything is about their children. Like my mother, they just kept going like the Energizer Bunny as the hits kept on coming, and head to bed at 7:30PM. There is no time to think of themselves.

Of course, I want to give back, to get some perspective through this work to this community. I hope I touched at least one families lives. I believe I have helped some people.  Now, the question is, where else and how else, can I help young adults in this community. Young adults in the craniofacial community are in dire need of attention. Everything about their bodies is changing, hormones are raging, and kids with craniofacial conditions realize that they are coming to a point where they want some independence, but also need the help of their parents to cope. They are becoming more aware of their bodies and those of their peers. They have a foot in both the adult and child worlds. The child world because they are still dependent on their parents  When at this crossroads it can be difficult how to deal with how one looks when everyone else is coming into the changes within their own bodies, too. The question of “who I am?” is a daunting one for this community. How can your appearance not define you? It’s tough to answer these questions alone, but in a group it is possible. That is the gift that the CCA retreats provide to these young adults and parents. I was so glad to be a part of it, again, this year.

Now, I just need to figure out what I can do, here, at home in New England.

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