n

Giving Him Wings

Printer Friendly
q

"Mommy, look at that little boy's nose!" "Ooh, that must've been quite a fall, is he ok?" "What's the story with the rubber nose? Is that elephantitis?" "Honk, Honk, are you clown?" Oh, my sister's kid had that. It went away by the time he was five." "Talk to your doctor, they are doing wonders with laser - in fact, my neighbor said…" I wasn't interested in what her neighbor said.

 

"What's wrong with his face?" said a little boy to me at the park yesterday. "Oh, it's a birthmark," I responded. "Does it hurt?" he continued. "No," I replied. Maybe you should give him a bath tonight. And tell him to use soap!" he recommended confidently. "Thanks for the advice," I thought to myself. Then I looked down at Kenny to check his reaction to what the little boy had said. He was already planted in the sandbox, building a sandcastle with his favorite stuffed dog, Duke.

Kenny is three years old. To date, the aforementioned questions and comments really haven't seemed to faze Kenny. To date, I try (vigilantly) not to let them faze me either. But some days are better than others. I'd like to believe that with age comes wisdom and that I'm wise enough not to let this stuff get to me. After all, isn't it human nature to notice and perhaps question someone who looks different? But it's my kid.

 

Kenny was born with an arteriovenous malformation (AVM) of the nasal and malar region. His lip and left cheek are red and engorged due to an over-activity of blood supply to the area and he has frequent nose bleeds. We were told at birth that it was a "bruise" resulting from birth trauma. By the time Kenny and I were discharged from the OB unit, were told that the "bruise" was a port wine stain and that it could be removed successfully with laser surgery.

 

Sixteen unsuccessful laser surgeries later, we discovered that Kenny's birthmark was an AVM. We are fortunate to have established a relationship with a world-renowned endovascular surgeon and remain hopeful that Kenny's condition, though incurable, will be kept under control.

 

The details of our clinical research, diagnostic trials and tribulations, and exhausting hospital experiences are no more difficult, unique or draining than for anyone who has a child with a medical condition that requires ongoing intervention. What remains most difficult for me, however, is my ability to remain strong, optimistic and hopeful that Kenny will have the backbone he needs to face and deal with the ignorant remarks, questions and potentially harmful teasing that are typically associated with kids who look different.

 

When I get bogged down with worry about Kenny's lifelong coping abilities, I am reminded of a quote once read by Eleanor Roosevelt:
 

"No one can make you feel inferior without your consent."

I must recognize and accept that this is his life to lead. As his mother, I can do all I can to foster his self-esteem, provide him with love, support and encouragement, and teach him the importance of tolerance. Kenny is the one who will have to experience life with a facial difference firsthand. I know he will get through it in the best way he knows how. But he's still my kid.

 

Published in the National Foundation for Facial Reconstruction (NFFR), Fall 2000 newsletter.