Tuesday, September 29, 2020

Jenny Gives Back and Shares Her Craniosynostosis Story

Editor's Note: Jenny Solymossy is my cousin. She lives in Wisconsin with her incredibly warm, kind husband Mike. She found CCA through me, this year, thanks to our marketplace. She offered to raise money through Color Street to celebrate Craniofacial Acceptance Month. Jenny was born with Craniosynostosis. She received surgery to correct it when she was 3 months old. Here is her story...

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By Jenny Johannes Solymossy

I was born with craniosynostosis. For those unfamiliar with craniosynostosis it is a birth defect that results in the premature closing of the cranial sutures before the brain has fully formed (premature fusing of plates). I had corrective surgery when I was 3 months old to separate the plates and give my brain room to grow. The surgeon swapped 2 different plates near the front of my skull. 

My whole life I’ve had people comment on the scar (that my dad affectionately calls my smile) which runs across the top of my head from behind one ear to behind the other. Some of the comments have been just curious questions and some were not so nice comments from classmates. 

As a teen I was rudely reminded that I have one eyebrow that is flat/ doesn’t have the same curvature that the other one and as an adult I’m reminded of this “flat eyebrow” fairly regularly when someone new does my makeup for a special event or when I’ve had a makeup consultation at the makeup counter at the mall. The scar usually gets a comment or question from any new hairstylist that does my hair. 

There have been some tough moments and times where I’m sick of explaining yet again why my eyebrows are different or what the scar on my head is but at the end of the day I believe what makes each of us different and unique is what makes us special. I’m grateful for my parents who identified something was wrong and advocated for me. I’m grateful for a successful surgery that allowed me to live a long and full life, and as hard as some moments are with the teasing, comments, questions, those moments are a part of my journey, one that has made me a stronger person. 

Up until a few weeks ago, when I was talking to my cousin Kara, I didn’t realize l belonged as part of a group. I always thought I had this rare, fluke thing that I was born with that no one seemed to have ever heard of, and to date, I’ve only ever met one other person with the same condition. I’ve not gone through nearly the amount of struggle as some, but I hope by sharing my story I can help make a difference to someone.

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