By Sabrina Robineau
The young girl on the left spent most of her childhood looking in the mirror, asking God why she was born different. She would constantly compare herself to her friends, her siblings and the rest of the world. She hated her reflection in the mirror and wished she had a "typical" face. She often felt trapped, hidden behind a face that didn't match who she was on the inside.
There was no social media when she was growing up. There was no way to easily search "craniofacial syndrome" on Google. There were no online networks to join for support. This girl felt completely alone, not knowing there were others out there who were born just like her. Others who had the same physical traits as her and who had the same surgeries that she'd gone through.
Flash forward 20 years later... that girl is now surrounded by hundreds of kids and adults who were also born with a craniofacial syndrome. Her world has been opened up and it is all thanks to CCA - Children's Craniofacial Association.
Attending my 1st CCA Retreat back in 2005, at 16 years old, it changed my life for the better. Not only did I finally get to meet other kids with Pfeiffer Syndrome and make new friends, CCA became my family. For the last 13 years, my CCA family has seen me through the best and worst times in my life and they have always been there supporting me.
At my 13th CCA Retreat last week, I paused a few times to look around and take it all in. It was the biggest retreat yet - 163 families!! I was just in awe. When I saw the kids running around, laughing, playing and chatting without a care in the world- it brought me back to my 8 year old self who once felt so alone and thought she was the only one born like this. It makes me so grateful for the kids that have found CCA at a younger age, so that they won't ever feel as alone as I had felt.
CCA also gave me something else that I always dreamed of but didn't believe was possible, which is... true love. If it wasn't for CCA, I never would have found the love of my life, my fiancĂ© Freddie, who I can’t wait to marry and start our life together.
The CCA retreats have helped me to accept myself for what I look like on the outside. It helped me to embrace my unique traits and love myself. The outside world can be tough and challenging. I still face judgments from the public. I still have my moments of doubt, and bad days where I feel like hiding.
That's why attending the CCA retreat every year is so important to me. I get to step back into the safe world for a few days and feel so much love and acceptance.
That's why attending the CCA retreat every year is so important to me. I get to step back into the safe world for a few days and feel so much love and acceptance.
This year's retreat was incredible as always. Even though I didn't feel like my usual self because of the past rough year I've had, I'm still so glad I got to see my CCA family and to feel surrounded by love and support. I truly can't imagine my life without these retreats and the amazing people that take part in them.
A big thank you to the CCA staff who worked so hard to put on an amazing retreat. I love and appreciate everything you do for us!!! Can't wait for next year!!
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