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When My Son Felt Like the 'Only One' With a Cleft Lip and Palate

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Our first son was born eight weeks premature. We were warned he might not cry and would immediately be taken to the NICU. The words “He is out” and a small cry were all I needed. With worried eyes, my husband said something was wrong with his lip — but I heard his cry. He was fine! A nurse let us know he was stable but had a unilateral cleft lip and palate. We had no idea what that meant, but she explained it and reassured us he would be fine.

Our son had two surgeries before he was 3 months old to repair his lip/palate. Over the next seven years, he had a few ear tube surgeries, started orthodontic work and he led a pretty typical life. However, at age 8, he came home upset about kids making fun of his appearance. He told me he felt like he was the only one in the world with his condition. I was heartbroken! In our eyes he was perfect, but I didn’t know anyone else with a similar condition either.

We visit our craniofacial clinic yearly, and this year was the first time they had a psychologist. I filled out the paper about his feelings and assumed he was happy with no problems. However, she asked him questions (he avoided eye contact), and this is when I realized how much the bullying has had an effect on him and that he might not be as happy as he portrays. She explained he should not feel this way and that we should seek help. She also warned the services would mostly likely not be covered by insurance. We immediately sought private schools, but we couldn’t afford it.

In a quest to find someone like him, I contacted the clinic and joined social networks without success. I then found the Children’s Craniofacial Association (CCA), which holds a retreat each year for kids like my son. I contacted them and immediately felt welcomed. We were sent brochures on the organization, information on his condition and the retreat, and the book “Wonder by R. J. Palacio, which tells the story of a fifth grader with a facial difference and his fight to fit in at a new school. The book is now being turned into a movie. I showed my son, and with tears in his eyes and a smile he told me, “Mom, now I don’t feel like the only one!” Those words hit deep, and I knew I had to figure out a way to get him to the retreat.

The webpage to register for the retreat said we could apply for state funding. We applied and were denied. How could this be? So many people have donated to charities in my son’s name. With the emotional support of many and financial support from some, we found a way and made reservations. We also read “Wonder,” and it gave my son a sense of belonging. This was a book he could relate to, the bullying especially. The retreat was wonderful. They had a magician, pool party, trip to the beach, and more! The children felt comfortable around us and freely offered hugs. The best part of the retreat, my son said, was making a local friend and leaving with an understanding that he is not the only one and there are other kids facing similar challenges. Fortunately, the retreat will be held locally for us next year in Reston, Va., so our entire family can attend.

Shortly after arriving home from the retreat, our orthodontist informed us his bone graft surgery needed to happen within two months or we would risk losing his tooth. Since insurance premiums went up, we went with a PPO with in-network doctors. Going with his original surgeon meant we would pay 100 percent out of pocket, including a couple nights’ hospital stay. Continuation of care would only be considered after I contacted all (79) in-network doctors. I do have an open mind, but I don’t want just anyone operating on my son.

After many unreturned phone calls and failed consults with surgeons not willing/able to operate, we found Dr. Renee. She was more than wonderful and completed his surgery on September 15. She left the following Sunday for a mission trip to help those in need in Venezuela. In anticipation of the surgery, we created a P.O. Box for him. He received gifts, cards, and letters from friends and strangers. CCA was the first care package he received; it included a quilt, homemade cards, glow glasses and such. These things helped ease his mind before surgery. Again, CCA, our new family, was there for us!

I often feel things work out for the best, but wow, what a ride! Our son can’t be the only one in this world, and we can’t be the only parents fighting this fight. He has a relatively common birth defect, with 1 in 700 people born with a cleft lip and palate. My son often asks me if he can meet Auggie Pullman, the main character from “Wonder,” and I explain that he is Auggie!

We are now looking forward to the upcoming movie. Unfortunately, his school did not apply for the Target grant, which was a sponsored field trip for him and his classmates to see the movie on opening day. I never received a response from the Board of Education, but the principal said it didn’t fit into their curriculum. I’m not quite sure I will ever understand that when they have anti-bullying signs everywhere in the school. Teen suicide is up. What would an expenses-paid, half-day field trip hurt? Oh well, our son is worth the fight. We will continue our quest to make sure he is not bullied and lives a happy life. He is also the proud big brother to twins, a brother and sister he prayed for.

If you would like to help, please feel free to donate directly to CCA in Kyle’s name or send him a letter: Kyle, P.O. Box 216, Pomfret, MD 20675.

Image via Contributor.

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Originally published: November 3, 2016
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