Life has been quite a journey full of ups, downs, and crazy turns along the way. It has been filled with trials and tribulations, love and laughter, smiles and tears but I wouldn’t have wanted it any other way. I am a wife, sister, daughter, mother, friend, teacher, student, and I have Treacher Collins Syndrome.
CCA has been a part of my life since I was 3 years old. My very first activity was a meet and great with Cher at her Heart of Stone Tour in 1989, followed very soon after by activities in Washington DC to promote awareness of craniofacial disorders and advocacy for much needed insurance coverages. It was at that time when several families who spent time with Cher realized as they connected and created lifelong friendships how very important it was to make those connections for the wellbeing of both parents and children. The first CCA Retreat was born from a very private and emotional discussion in Cher’s hotel room about how great it was to finally be in a place together where our families felt safe and understood. My family participated in that very first retreat in Orlando, Florida. Char and Jill along with others have been an important part of my life ever since. We were not able to attend every retreat but when we did I always loved being with my old friends and making new ones. I met Emily Paulson, my first real friend with TCS, when I was 6 and Emily was about 18 months old. In Fort Lauderdale, I was finally reunited with Emily in person for the first time since I thought I could carry her around like my very own baby doll who looked like me! While life has gotten busy over the years, the lifelong friends and support system from CCA have never faltered.
I was born on May 20, 1986 (a little fun fact, Cher and I share the same birthday!). At four months old, I went into full respiratory and cardiac arrest at home. Doctors worked tirelessly for hours to resuscitate me. I was placed on a ventilator and doctors informed my family that they were not sure I would survive through the night and feared severe neurological damage in case of survival. Several days later I made my first trip to the OR to be trached. I know this worrisome beginning to life may sound all too familiar to those of you reading this. Since that time, I have undergone over 50 surgical procedures. Having TCS has impacted my life tremendously; however, even at a very young age I learned to use it as a positive influence. I continue to strive to grow and become an outstanding example of how someone can excel despite what would appear to be overwhelming odds.
While growing up I remained active despite constant interruptions from school due to medical complications and numerous surgical procedures. I was a curious, bright, and voracious learner. I received special education services to help support me over the years.
I danced, performed in community theatre, went to homecoming dances and proms, participated in school activities and went on to graduate in the top five percent of my high school class. Upon graduating high school, I became the recipient of a Ben Carson scholarship and was named Baltimore County’s Young Woman of the Year. I was nominated by my surgeon, Craig Dufresne, and received the American Society of Plastic Surgeons’ Johnson and Johnson Patients of Courage Award. A donation was made to CCA in honor of that award. I went to college and obtained my master’s degree in Teacher as a Leader in Autism Spectrum Disorders.
Bulletin boards decorated, individualized picture schedules, lesson plans prepared … “Am I ready for this? Will my students like me? Will they ask questions about my appearance?” Those thoughts raced through my mind the first day I became a teacher. Teaching is challenging, that is just a fact. However, no challenge has paled in comparison to the unconditional love I received from my students. We all have moments of self-doubt and fear of the unknown but I am so glad it did not hold me back from fulfilling my dreams of becoming a teacher. I have been a special education teacher for eight years and the children I have taught will always have a special place in my heart.
Having been a child with special needs, seeing CCA children overcome obstacles, and teaching children with disabilities has inspired me to be a leader in the field so that I can help provide the best education for all children. In July, I took a year of leave from teaching because I was accepted to the Center for Innovation and Leadership in Special Education fellowship at Kennedy Krieger Institute in Baltimore. I am receiving intensive mentor training in the neuroscience of learning and the learner, principles of behavior change, knowledge acquisition of evidence based practice, and education law. I am also pursuing an advance degree in instructional leadership and professional development.
While I am passionate about my work, my family is truly the most important part of my life. I have been married to my middle school sweetheart for 6 years. We’ve shared quite an incredible journey together but nothing tops the proposal at the Grand Canyon, exchanging our vows in front of those we love most, and experiencing the birth of our two miracle babies. My favorite thing in the world is relaxing at home watching Zootopia for the hundredth time while holding Hudson in my lap, playing cars with Lyle, and seeing Kevin smiling back at me as he gives our dog Copper a belly rub.
I believe that my life experiences can be directly attributed to embracing my differences many years ago. At a young age, I made the decision to turn my disability into a teaching tool. I grew up within a family who was dedicated to empowering and giving hope to people with facial differences and their families through sharing our experiences for the purpose of reciprocal support.
“She made not live through the night,” they said. Here I am.
“She can’t swim with a trach,” they said. Did it...all...the...time (though for safety reasons I might not recommend it for everyone).
“She will struggle to learn to read,” they said. I struggled but it “clicked” in second grade and now I am pursuing a post-graduate education.
“You’ll find love one day,” they said. I did and it appeared when I least expected it.
Be true to yourself. Educate others and spread kindness. Most importantly, bring your hopes and dreams to fruition.
As a teacher, mother, an adult with a disability, and lover of all children’s books …
Listen to the musn’ts child,
Listen to the don’ts
Listen to the shouldn’ts
The impossible, the won’ts
Listen to the never haves
Then listen close to me –
Anything can happen, child,
Anything can be …
The famous words of Shel Silverstein.