“You think you are stressed now! Just wait until the baby arrives! Now that’s when you’ll really begin to worry!”
My sister-in-law, Liz, and I were chatting on the phone one evening in the dead of winter. I was already six months along in my pregnancy with our first child, Ethan. My husband, John, and I had just returned from Vermont for a final baby-free getaway before Ethan was to arrive several months later. I had been telling Liz all about our week away, but also confided in her that if I hadn’t felt anything kicking inside me for awhile, I would purposefully drink orange juice to cause the baby to kick.
One would presume that feeling stressed while pregnant was natural. Let’s face it, the nine month wait and hope for a healthy baby is hard for anyone. In our case, it was even more complicated. You see, I was the first of my family to have a condition that resulted in my being born with only one finger on each hand, shortened forearms and one toe on each foot. The condition is called “ectrodactyly” and, although the name sounds quite fancy (and also sounds sort of like a type of dinosaur), all it really means is “missing digits.” However, because no one else in my family had ever been born like me, I presumed it would end with me too. In a word, I was naïve.
At twenty weeks gestation, we went to our doctor appointment for the sonogram. This was the appointment where most parents-to-be are anxious to find out if the baby is a boy or girl. I, on the other hand, was not focused on genitals, only fingers, or lack thereof. As the doctor waved the wand over my abdomen, you couldn’t miss the single tiny finger almost waving in our direction. We knew there were risks, given my own lot in life, but somehow I was still quite shocked. Two and half years later, our second of three children, Charlie, would arrive having the same condition, but with two fingers on each hand and, like his brother Ethan, two toes on his foot.
Although people will tell me that our boys are lucky since they have me as a role model, I actually think I was just as fortunate to have my parents act as mine.
Back when I was born, my parents had no advance warning of my physical condition. One moment my mom was pushing me out and the next the doctor is informing my parents “Excuse me, it seems there is an abnormality….” But despite the shock and inexperience of parenting a baby born with such a blatant physical difference, somehow my parents instinctively knew just how to raise a daughter like me. Sure, there were things they tried out that failed. For example, not knowing how I would ever manage a pencil or a scissor, they brought me to specialists to explore the possibility of prosthetics. But to their dismay, I simply wriggled out of those darn things. Even at a very young age I knew intuitively that this type of assistance wasn’t right for me. And despite the urge to overprotect, my parents allowed me to explore life naturally and to fail…..and then keep trying. Whether it was walking, writing, tying my shoes, riding a bike or fill-in-the blank, my parents understood correctly that what I needed the most was simply to be raised with the assumption that I could do anything I set my heart and mind to. If I failed, well, as we used to joke, “not everyone can play the flute anyway.” Incidentally, I did learn to play the trombone. When other kids were inevitably curious about my appearance, my parents encouraged me to engage them directly, talking about my difference and asking them questions about themselves, too. To my relief the method often worked and those kids would soon allow me to change the subject from my difference to what games we could play.
But beyond their intentional passivity while I learned important life lessons, my parents provided me the key ingredients I would one day leverage in my quest for unconditional self-acceptance. As a young child, my favorite game my mom would play was, “My Little Girl.” In it, she would say to me, “You couldn’t be my little girl, because she has beautiful long dark hair!” I would point to my dark hair and grin proudly. “You couldn’t be my little girl because she has the most gorgeous dark brown eyes!” and I would point again to my eyes, almost giddy with excitement. She would continue pointing out various things about me, but then at the end, came my favorite part. “You just couldn’t be my darling little girl, Meggie. My Meggie has only one finger on each hand!” And with that, I would wave my two fingers high in the air, all around. “Me! Me! I have one finger on each hand!” “Ah, then you must be my beautiful little girl!” We would embrace, and I would beg to play it over again. Although my Mom for certain grew bored, I never tired of the game.
My parents also had a strict “no pity party” rule. Although I sometimes had my down days, where I would come home from school and cry my eyes out, there was little tolerance for any extended self-pity in my home. It’s not that they didn’t understand my sorrow and frustration about the fact that I didn’t look like everyone else or that I suffered stares from so many people, they just knew that it was crucial for me to move on quickly and not to dwell on those things I couldn’t control.
Fast forward eleven plus years since that sonogram at the hospital. Ethan is now a 6th grader in Middle School, Charlie is a third grader, and their younger sister, a first grader. I know that many people would take one look at us with our physical differences and believe they would never want to trade places. However, living in my shoes, I would not change a thing…..truly.
While raising our children, John and I have used my parents as our own role models. We have the parental instinct to protect them, but we make sure never to overprotect. We teach them that anything is possible. In addition to his love of playing basketball and tennis, Ethan took up the guitar while at sleep-away camp this summer. In addition to loving archery and drawing, it was Charlie who convinced us that he could wear a baseball glove and join the team last Spring.
By having the good fortune of giving birth to my difference, I have learned to understand and appreciate the beauty of imperfection, and passed this wisdom on to my own children. We have been raising them to believe in themselves, and even view their difference with pride rather than shame. In that sense, I don’t even need to play a game like “My little boy” with my kids. They already know how to flaunt the very thing that makes them unique.