This past month I wrote a piece for a publication printed by one of my favorite organizations in the world. myFace, as I’ve written about and fund-raised for before, is an organization that supports, connects and empowers families as well as quite literally changes the faces of children from all over the world.
Their “About Me” section moves me in ways I can’t quite put into words:
Without our support, having a facial deformity can be shameful and humiliating while also impeding the basic functions a child needs to survive and grow. In America alone, one in 700 children is born with an oro-facial cleft and one in 1,600 is born with facial asymmetry, a missing ear, a jaw deformity, or a defect of the skull, nerves or facial bones. These are myFace’s children.
myFace, formerly the National Foundation for Facial Reconstruction, was founded to address the all-too-visible plight of those with facial deformity by assuring them access to the comprehensive and highly personalized team care at the Institute of Reconstructive Plastic Surgery (IRPS) at NYU Langone Medical Center. The IRPS provides integrative, highly specialized and personalized team care to all those who request treatment, regardless of the type or severity of the anomaly, the length of treatment, or the family’s ability to afford care.
This organization’s phenomenal group of leaders began publishing a magazine as a way to connect our community and show new members of our tribe that they are not alone.
When asked to write a piece, I was flattered and beyond thrilled. Hoping that my two years could provide some solace and an ounce of wisdom to those newer than myself, I was asked specifically to address these new families and below is my open letter to them.
I feel I can call you that… friends… although we are in fact perfect strangers…because the ties that bind us are unique, strong and have great meaning to all of us. If you receive this publication, chances are we have similar experiences, emotions… and children. In this letter though, I am specifically writing to those of you who are struggling right now. For those of you who are new parents, or new at parenting a child with any variety of syndrome or difference. Because I want to make sure you know that sometimes the best place to start these incredible journeys…is struggling and feeling like you’re at the bottom. That is certainly where I started.
My daughter, Landon, was born two years ago in New York City. After a healthy and active pregnancy I gave birth to a daughter with Treacher Collins Syndrome. I was told this information by four specialists while recovering from emergency surgery, under anesthesia, alone and at 4 o’clock in the morning. To say that there was no crueler way to be told this information skims the surface on how I feel about that particular morning. My start as a mother to my beautiful girl was equal parts painful and joyful. I was in mourning for the child I thought I was going to have, while desperately wanting to celebrate the future of a baby I was not sure I knew how to parent.
Now, after two years of this thing called parenting, I’m here to make sure you know that this range of emotions is completely normal and healthy to recognize. For you, I want to draw upon the wisdom I’ve derived from these two years. To mention that which I wish someone had said to me two years ago in that hospital room.
Your child WILL thrive, WILL accomplish everything you’ve ever wanted them to, and WILL teach you more than you can teach them. When I brought Landon home from the hospital, there was so much doubt in my mind and heart as to what her future held. Rare syndromes are a tricky thing. Without a great deal of research, specialists sometimes guess, sometimes tell you what could or will happen without truly knowing. I marvel now at all that Landon does, says, and learns. I would give anything to take back those hours spent worrying or crying over what I thought might be lost in her life. She has proven to me that her life will far surpass anything I wish for her.
Recently, my family had our first taste of cruelty. Our first experience with teasing unfolded over lunch at the hands of an eight year old boy. I’ve known all along this day would come and that there will be more than one of these experiences. Despite knowing this, I wasn’t prepared for what I wanted to do and say to that boy. The art of mastering a brave face, kind voice and using your experience to teach is one of the hardest things you’ll do in your life. Your heart will break wide open. The most important thing is to rise above. Don’t let ugliness settle into your heart or mind. Your child will see themselves as you see them. Your words and your actions will shape how they themselves handle these situations. If you teach, they will teach. If you smile and choose kindness, they too will strive for this.
A new, very delicate balance is going to emerge. An intense focus on their care and needs while also focusing on them being just normal kids. A desire for the world to see your child as exactly the same as every other child, yet also making sure they get the special attention they may need. I emphasize constantly that I don’t want her to get special treatment… and then caveat that with instructions on her bahas, what to do when someone asks about her ears, and a request they try to get her to play with some of the toys from OT. Walking this tightrope felt hard for a while, until I decided to just let go. I decided to let her be that normal kid. I downplay the hearing aids because they are not at all the most important thing about her. Therapy now is a joy for me and no longer a reminder of how we’re different. Let go of the pressure and don’t forget to just live.
You will not be defined by your child’s differences but by how you respond to them. You will need to become their advocate, their at-home therapist, their beacon of light and happiness when the world feels dark. And eventually, you will become their student, learning what courage truly is from their actions. These past two years have been the most remarkable of my life. They will be for you too because you too can do hard things.