My "Cleftie"

Chapter 5: Bad Places

Throughout the stay at the hospital, my husband and I didn’t talk much. Exhaustion and stress was weighing heavily on us. The nurses would come in every 2 hours or so and then we had the doctors, the counselors, the volunteers, the phone calls, the family visits, that rest was a little hard. I know we appreciated the distractions but it was still tiring. By the end of the second day I was SO DESPERATE to leave the hospital that I would have bribed someone. Evalyn recovered and we had learned to manage her pain so that she could eat well. Dr. J released her and told us that she could be seen the next day at the clinic to get her molding.

The next day we got Evalyn’s NAM and seeing her face with it on was like a beacon of hope. She looked almost normal. It was a bitter sweet thing; I had been so used to seeing her deformed face that I didn’t notice it anymore. Seeing her look more like a normal baby was odd. Dr. J explained the cleaning of it, how to put it on, how to feed with it in, that she needed to wear it at all times, only taken off when being cleaned or adjusted. We would need to come back every 2 weeks to have adjustments made to the NAM so that it would be more effective. Patients are usually asked to come in weekly but since we had an 8 hr drive to make they said 2 weeks would be okay. We were cleared to go home!

I love Austin but it wasn’t home, it wasn’t where my daughter was. After almost a week and a half we were FINALLY going home to our other baby and our own bed. I had never been away from Shauna for so long and was feeling homesick and depressed with not being able to see my munchkin. Shauna was happy too, she had been going to daycare while grandma and grandpa worked and wanted to tell me all about her new friends and the teachers. It felt like things were turning around and getting better now that we were going home.

Getting on the plane to go back home I felt so much more confident with Evalyn that I didn’t mind the occasional stares or pitying looks thrown our way. We had gotten so used to covering her carrier that we didn’t think twice about doing it. We always said that it was cold or too hot or wanted to protect her from the sun. We were never ashamed of how she looked, but we both knew deep down that we did it to keep other people from seeing her and starting the comments and stares.

What most people don’t realize is that while we say “sticks and stones will break my bones, but words will never hurt me”; words hurt. They have the power to turn what could be a great moment or happy into something embarrassing or ruined. It may not be the words said exactly but the messages or meanings behind them. Every time I would see someone with special needs or that looked “different” I would make sure to get a good look to satisfy my curiosity then turn around to let them and myself know that I saw them and it was not going to be a big deal. They are human and have feelings, feelings that are more often than not more sensitive due to the ignorance of others.  I never considered that while that person might get their feelings hurt, that their parents or companions would be hurt as well. I know that not everyone is out to hurt people but it still doesn’t change the fact that it does. Everyone has opinion and is entitled to it but they are NOT entitled to share it, especially if is hurtful to others or judgmental.

Getting back in our city I could feel the peacefulness that had settled over us begin to fade. People would stare, point, talk, and judge us. It was almost as if the whole trip was a dream and the only thing to make it real was the NAM in Evalyn’s mouth. I always felt like I wasn’t good enough that I had done something wrong in my life and karma was paying me back by punishing my baby, my husband and myself. I hated myself for feeling this way and the situation we were in. I wanted to get over it but it felt like it was building and building inside of me and that I was going to combust. The only person who made me feel like I wasn’t alone and to get me out of my wallowing was Evalyn’s speech therapist. She would see us twice a week and every time I sat there and talked with her while she fed Evalyn and did mouth exercises with her, it would feel like a cloud was lifted and I would see that I am not the only one going through this. I know that there are plenty of other kids with cleft and that there are worse conditions out there but it didn’t matter. It made sense in my mind but my heart didn’t care. Her speech therapist, Ms. N was amazing, not only in her therapy with Evalyn but with her therapy in me. I don’t know if she ever knew or saw what I dark place I was in, but she helped me get through it. She would tell me funny stories about her kids or other patients. She never said anything specific or gave names but things that would happen that was amusing or downright hilarious. She would tell me about how well kids she had in the past that grew up were doing so well. She would also tell me about some kids who struggled too. I always felt that even if Evalyn didn’t progress or do well, that it would be okay because Ms. N would be there to help her and us to get her where she needed to be. She made me see that while Evalyn’s situation sucked, it could be so much worse and I was lucky even if I didn’t feel like it.

I hated answering all the stupid questions that would be asked whenever we went to the store or anywhere with Evalyn about her NAM and her condition, but I did it. I knew that if I didn’t then I might be helping that person stay uneducated about it. I felt that if I got through to at least ONE person that it would be better. That one person was all I needed to get through to and they would spread it on. I don’t know if I ever actually ever got through to anyone but I know I tried.