One Of This Month's Featured Families!
Bilateral Cleft Lip and Palate
In spite of all the things that Lydia has to endure, her spirit is incredible. In some ways, Lydia has the best emotional IQ in the family. She is insightful and empathetic. She feels good about and likes herself.
There was a time when Lydia was sensitive to her "flat nose". And I remember one time that her grief was so great that all I could do was lie down on the floor with her and hug her for an hour. In desperation, I told her of an experience I had one time in China when children were laughing and teasing me for my loooong nose. Surprisingly, it helped her understand that we all are different and that is OK.
One thing I want my children to know is my unconditional love...no matter what.
Hi, I'm Dean, proud father of Lydia. Lydia, now 9, is perhaps the best blessing I've had in life.
I'm a late-in-life dad. My son was born when I was 40. After my son was born, time caught up with us, so we chose adoption as a way to build our family. As we considered adoption, we were asked what special needs we felt that we could accept. My wife and I each had childhood friends with CL&P, so we felt that we could handle this. The paperwork seemed to take forever, but while in process, we connected with a group of parents of kids with clefts. That was great!
Several months later we traveled to South Korea
to receive our 5-month-old daughter with unrepaired bilateral cleft lip and palate. Our family and friends welcomed and celebrated. In the 9 years hence, Lydia has had the lip closure then lots of incremental "nips and tucks" at a regional craniofacial clinic 100 miles away. Each surgery has been a trauma for Lydia. And for me, it is just too hard to verbalize the depth of my feelings when she is wheeled away in the gurney for surgery. If I could volunteer to go under the knife for her, I'd do it in a flash.
Our school has zero tolerance for teasing and harassment. And they enforce it. The teasing my daughter reports is generally from outside areas where she is non known, such as summer programs. We first do all we can to give Lydia positive self-esteem, talking with the teaser and if necessary the teacher, principal or parent. While this stops the teasing, Lydia is hypersensitive, and sometimes misinterprets well-intentioned comments as teasing.
Lydia has been aware the differences from the beginning. I remember the times that as an infant and toddler, she would lie on my chest and "explore" my mouth. While that felt intrusive, this is and far less intrusive than with the many surgeries she has and will receive.
Lydia is now in the 3rd grade. She does well. Her classmates are supportive, and when we take her from school her for her surgery, her classmates gather around and give her a group hug. After surgeries she is concerned about how she looks and how her classmates will receive her. When she does return, her peers welcome her like a returning war hero.
When they were young, I would tell each child "I love you" then I would ask them "Why do I Iove you?" And, I would answer "Just Because You Are You". We abbreviate that as JBYY. So when my kids go off to play with others, I just say JBYY. The smile back is great! That look of joy is irreplaceable. It's great to be a dad!
Feature of the Month
Stories of Craniofacial Care and Inspiration
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This cleftAdvocate page was last updated March 25, 2014