1&2)Heartbroken and devastated- You never, ever want your child to have any hardships. When you dream of your child, you see "perfection." You see what could be. You see your angel. I could only see a "defect." I couldn't believe that MY child was going to have a "defect." I had to grieve. I had to realize that my child wasn't "perfect," but that he was perfect. What's the difference between "perfect" and perfect? "Perfect" is the Hollywood, sensationalized version of someone. Perfect is the way God made someone. When I was explaining his "defect" to someone, I called him "K-perfect." He was still my wonderful, beautiful baby boy. He was just different than how I pictured him.
3)Guilty- I felt a lot of guilt when K was diagnosed. I felt like it was my fault. I mean, I WAS the one that was incubating him. He was growing in MY tummy. Was it my fault? The reasons for a cleft are truly unknown. Some possible reasons I was told were an folic acid deficiency in the mother (that would be me and the crazy amount of throwing up I did my entire pregnancy) and some genetic factor (again, that would be me because we found out I would have had an uncle with CL/P). It wasn't until the pre-natal consult with K's cleft team did the surgeon tell me that it could have been caused from him sticking his hands in his mouth. That reason made more sense because every. single. time. we had an ultrasound he had his hands in his face.
4)Shallow- I think that one is self-explanatory. K was going to look different than everyone else and possibly talk different than everyone else. If I may tell the truth, I was afraid of the first time I would meet K. How would I react? Would I be disgusted? afraid? Would I cry not out of happiness, but out sadness? What would other people say? I had heard too many stories of people's reactions to children with clefts. All that went out of the window when he was born though. He was absolutely beautiful. I know I am biased, but everyone thought he was beautiful.
When I started telling everyone about K's cleft, it was for my own therapy. It helped me heal to tell people. But man, let me tell you I was sure tired of hearing people tell me it can be "fixed." My child is not a car, he can't be "fixed." Oh he'll just have to have surgery. Yes, my tiny baby was going to have to have MAJOR surgery and be put under anesthesia. That's a big deal.
I got over it though, but how could you not with this cute face?
Not only would we have to deal with surgery though. It doesn't just end with surgery though and its not just one surgery. K will probably have at least 4 surgeries over the course of his childhood and adolescence. We will have braces and speech therapy too. While there are several things that could have gone wrong or could have been worse, it doesn't minimize what K will go through. It was very frustrating to hear people minimize K's situation.
I get on my soapbox when I talk about CL/P, but here is a website with some more information: Cleftline
He is beautiful.
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