Tuesday, April 23, 2013

Children's Craniofacial Association = One Big Happy Family

Another year has come and gone. As I sit in my kitchen, back at home, I cannot believe the CCA retreat is already over once again. It was one of the best ones yet. I never grow tired of it and honestly, I don't think I ever will. 

Even though it is called "Children's Craniofacial Association", as an adult, I feel that it is still incredibly important to continue attending these retreats and being a part of this amazing social network. One of my favourite things to do at the retreat is to mingle with the parents of a child with a craniofacial syndrome. I love talking to them about what I have been through and how far I've come, despite the challenges along the way. I want to give them hope that their child can do the same. Did I ever think I would make it to University, majoring in a subject that I love? Never. But here I am now, doing exactly what I always dreamed of. - It really doesn't get any better than that. 

Another thing that I really love is the overwhelming support I feel from my CCA friends. When I see these people every year, it truly feels like a 'family 'reunion' because in a way, we are one big happy family. There's nothing like it. Not to mention; people with craniofacial syndromes inherit similar traits, therefore we all look alike in some way. It feels like they’re my ‘distant cousins’ lol. Going to these retreats is like entering another world, my world. I feel safe, loved, protected and accepted. I feel like I belong; which is why I look forward to this every year. I never want to miss a chance to go back to this world, even if it's only for a short period of time. It always feels weird when I go back home after the retreat because I have to step back into the other world; reality

One of the things that really stood out to me this year was the love from the fathers. You can tell just by watching them with their child how much they really care for them. When I saw these fathers, I couldn’t help but wish that my dad would want to be there too. Even though I have an amazing mom; At the back of my mind, I have always wondered what it would be like to have my father there too. When a child is born with a craniofacial syndrome, they are going to need all the support they can get. Support from both parents is the most important thing.

Life is like a stack of cards, you’re stuck with the cards you’re dealt, and you can’t change it. When your child is born with a craniofacial syndrome, you have to either accept it or deny that it’s happening. Unfortunately, my dad chose to deny it. Growing up, I never felt the “unconditional love” from him, I always felt that he wanted to hide the “Pfeiffer” part of me and pretend that I was “normal”. Sure I was normal in some ways, but in other ways I was not. When my younger half-sister was born, I felt even more out of place. To me she was perfect. She had no abnormalities and no medical problems. This was hard for me to go through because once she entered the picture; I was no longer the only daughter in my dad’s life. He now had a ‘perfect’ daughter and I felt like the odd one out.

There was a point in my childhood where I didn’t want to deal with Pfeiffer Syndrome. I didn’t want any part of it; I just wanted to live a normal life. I realize now that this attitude was brought on by the way that my dad always treated me. “There’s nothing wrong with you. You’re perfectly fine. You’re the same as your brothers and sister”. So sometimes he made me feel that it was wrong to think that I was ‘different’, but yet deep down, I always felt different from my siblings. Since my dad saw me as ‘normal’, he always belittled my accomplishments in school. It took a lot of strength and effort to get through school while having surgeries at the same time; therefore it would upset me when my dad would shrug it off and say “well you could have gotten a higher grade”. This made me try even harder to do well in school so that I could make my dad proud. However, nothing I did was ever good enough for him.

Looking back, I see where most of my insecurities and doubts surfaced. It was from the lack of support and unconditional love. Even though it hurts not to have support from my dad, now I finally realize I don’t NEED it. I don’t need him. I have to focus on the fact that I have the love and support from my family, my friends and more importantly my friends from CCA. I feel sorry for my dad (and my siblings) for missing out on this amazing event every year. I feel so blessed to be a part of CCA that I wouldn’t trade this for anything. I am thankful to have this syndrome so I can use my experiences to help others who are going through difficult times.

This is exactly what CCA is all about; being proud of who you are and help others feel the same way about themselves. I am so grateful for my mom who has helped me become the woman I am today. I love myself just the way I am. I am not ashamed and I definitely don’t want to ‘hide’ the unique side of me. Unfortunately not everyone in our lives will be as supportive as others, but this is where you have to choose whether or not to let it bother you. I hate that I can’t share the CCA world with my dad and my siblings, but I am working on letting it go and just enjoying this part of my life.  

Always be true to yourself and be proud of what you accomplish :) 

“No one can make you feel inferior without your consent.”  ~ Eleanor Roosevelt

Road Scholar Transport Truck Spreading awareness for CCA!!

- Sabrina


  1. Excellent website. Lots of useful information here. I am sending it to a few friends ans also sharing in delicious. And obviously, thanks for your effort!


    Devonte Joseph

  2. Thank you Sabrina for this moving tribute in support of CCA's family retreat. You and your Mom will always be a special part of the CCA Family!

  3. I wish CCA kids to have a great future and you are the real, big and happy family. God Bless you all!


We welcome and encourage all readers to post feedback, however, we reserve the right to remove any comments that are deemed offensive or unrelated to the topic of discussion. Thank you for understanding and for helping us to foster a healthy environment for the families that we serve.