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.

Wednesday, September 16, 2020

Christian Hadjipateras' Mom Shares Her Parent Perspective

Christian Hadjipateras is part of our Craniofacial Acceptance Month speakers' week. You can watch his video about how he views acceptance of his facial difference below.

A few weeks ago his mother, Marianna, shared with us this testimonial about her experiences raising and caring for Christian. We hope you enjoy what she shared with us. Welcome to the CCA community, Marianna.

I have been wanting to write something for a long time now, ever since my son Christian got involved with your wonderful organisation.

Where to start? Christian was born in London, UK in August 1984. It was my first pregnancy and I had quite a few scans- nothing whatsoever had been detected. Christian was delivered by emergency C-section and because I had elected to be fully anaesthetised, my husband and close family all saw Christian before I did. The doctor wanted me to get my strength back before I met my baby. One day, my mum and my aunt had gone to the paediatric ICU to visit Christian and they saw a nurse taking a Polaroid photo of him : " To show Mummy before she meets baby ....." I later heard that some mums cannot accept their babies and somehow they thought a photo would "prepare " me in a gentler way..... Simultaneously though, I myself realised that if I didn't see my baby soon I may have suffered some sort of breakdown. My husband had been trying to describe what Christian looked like but it was difficult. I have to admit that I didn't even know what a cleft palate was let alone the many other Craniofacial abnormalities he had. .. No matter. It was love at first sight! For all of us. It transpired that the doctors were also very puzzled by the extremely complex and unusual combination of facial differences. They initially thought that the cleft went all the way up to the top of his head and that the frontal lobe of the brain would have been affected. It wasn't.

I will not dwell too much on what happened for the next twenty five years or so but suffice it to say that Christian underwent almost 50 surgeries. The life changing procedures took place in Paris, London, Chicago and Los Angeles.

I am not trained to be a counsellor but I am very open to to helping other parents in any way I can. I feel particularly strongly about this because when Christian was born we had no support groups to turn to. I realise now how profoundly VITAL this support is ....This is why organisations such as yours, Facing the Future in Chicago, and Changing Faces (founded in the UK in 1992) do such amazing work. I am very happy and proud that Christian is involved with CCA.

I wish with every fibre of my being that one day we can live in a society that is without prejudice, preconceptions, intrusiveness and tactlessness and that we will all see the essence of each other with our hearts and with eyes of love.

Tuesday, September 15, 2020

How My Microtia and Atresia Helped Me Find My Purpose

by Camilla Gilbert
edited by Kara Jackman

Browsing through Twitter a few months ago, we found Camilla Gilbert through a post she wrote about hearing loss, disability, and intersectionality with her other identifies – woman, African American, mother. Camilla has clearly accomplished so much that we knew we had to include her story in our Craniofacial Acceptance Month celebration. There are so many children in our community that were born with microtia or atresia, or have it as part of their syndrome, that need to read her words. With multiple academic degrees, a child, meaningful work, and more, Camilla lives the life of so many kids' dreams. 

Camilla Gilbert identifies as a black, deaf woman with bilateral microtia and atresia. For over 30 years, she has fought for people that are deaf, hard of hearing, and people with disabilities. “My lived experiences with microtia and atresia have included confusion, isolation, and pressures of societal expectations to be more “able-bodied” versus embracing my deafness. However, my experiences have taught me resiliency, dismantling assumptions, and genuinely being myself.”

All of this hard, internal work, which Camilla gladly undertook, began at an early age growing up in the West End community of Cincinnati, Ohio, a neighborhood with a tough reputation. Camilla saw it differently though, putting a positive spin on the place she called home for some years. In the West End Camilla says she “observed African Americans being successful as entrepreneurs, developers, and teachers. News media may call the West End ‘the rough side of town,’ but I want to change the narrative of my neighborhood. The West End taught me the importance of work ethic, being authentic, the importance of family, and loyalty towards the people who support you. Without my foundation of the West End community, I would not be the woman I am today.”

During her coming of age, she had the typical trials and tribulations that people with facial differences experience. She writes, “my life with microtia and atresia was a rollercoaster and still comes with challenges. Not being able to find anyone that can relate to your experiences is a very isolating and lonely experience. I recall crying myself to sleep and asking the universe, “why me?” and prayed for typical ears. Bullying was part of my journey beginning in the 6th grade when students were trying to prove themselves. I was typically the target of being attacked and teased. I managed my bullying experiences with my intelligence, ambition, and having the sense that good days would come (I had a vision for myself at a very young age). Also, I experienced curiosity from others with stares, questions, and awkward conversations about my ears. Students and strangers would stop to get a glance at my uniqueness, point, laugh, and walk away. However, during my elementary and junior high school years, my peers were not comfortable seeing my differences, and they made jokes out of my ears. They used to come to me, stare, point, and ask the question that I dreaded each day, “Why are your ears that way?” or “Why do you look like that?” These questions were a constant reminder that I was different where I just wanted to be a typical kid.”

With all the questions and bullying that continued into junior high, Camilla realized she had to adopt a hide-in-plain-sight strategy to get through middle and high school. Thanks to a headband and perfectly placed straight hair, she was able to cover up her differences. She said of the headbands, “I wore different headbands for over 14 years and dismissed my microtia and atresia and hearing impairment, and focused passing as an able-bodied, hearing person.”

Once she reached college, the hiding helped her pursue curricular and extracurricular activities among various students with which she went to school. She says, “College life at Central State University was the first time I did not have any disability services, and I gained independence with my education. However, I was still struggling with my acceptance of microtia and atresia and hearing loss. I continued to hide behind my cloth headband and even forgot the name of my condition. I went to some parties and met people while on campus, but remained feeling isolated. I had a part-time job at a retail clothing store where I developed a family with the women there. I graduated from Central State University with a Bachelor of Science Degree in Computer Science and Mathematics and thought I would have this fabulous IT job.”

Or so she thought!  

After a quick google search, Camilla discovered that the universe had other plans for her.

“I searched the term microtia and began to learn what it was. I knew the name but still felt alone because I did not know anyone else with microtia, so I put it on the back burner, especially since I was going to embark on the new journey of Motherhood. It wasn’t until I held my daughter in my arms for the first time, pure happiness and responsibility developed. Not only did I have the responsibility to care for my daughter, but I also had the responsibility to walk in my truth as a woman with microtia and atresia”.

A year after giving birth to her daughter she stopped wearing the headbands. Two years after that, she found a group of friends with microtia: the Hearing Loss Association of America and Ear Community. From both groups she “learned so much about hearing loss, how to be an advocate, improved hearing aid technologies, and a community of friends with similar life experiences.”

In 2013, she attended her first Ear Community picnic, which sounds a whole lot like CCA’s Annual Retreat. “The first Ear Community Picnic I attended was in Columbus, Ohio. I was not sure what to expect, so I walked towards the picnic shelter slowly with nerves and met with the picnic host Justin. Justin is an adult with microtia and shared experiences with microtia. I began to see babies, kids, and other adults with microtia, and it was a very emotional experience. Before this picnic, I never experienced being in a community with microtia. Parents came to me to get advice and reassurance that their child with microtia would excel just from my own lived experiences. The encouragement from the kids, adults, and the parents sparked a fire in my soul. The community has influenced my drive, passion, and advocacy for people with microtia. I switched my career path from IT to Social Services and Education.”

Clearly driven by this passion, she pursued a master’s in social work from the University of Cincinnati, and more recently is working on a Doctor of Education from Northern Kentucky University. Her current research focuses on disability studies and finding ways to weave in her lived experiences. Her article “Microtia and Atresia: Navigating a World of Difference” appears in the May/June Hearing Life magazine published by the Hearing Loss Association of America.). Her current project, she says, “includes creating a positive platform to highlight the accomplishments, successes, education, and resources for people with microtia.” Further she affirms, “I no longer want our differences to be associated with medical definitions. My motto is, ‘we are more than just our ears!’ She is founder of Microtia Life, LLC, (http://www.microtialife.com) and uses the hashtag #microtialife to spread her message on social media. She has a fabulous Youtube account filled with videos, too. Please check that out. 


Thank you Camilla for being so open and honest about your journey. We look forward to hearing more about your work, research, and life as you move into the future.