“Your levels seem off. Even though there’s a heartbeat, we’re going to have to carefully monitor you. Come back each week and, by the end of the month, either the pregnancy will be viable or naturally terminate on its own.” I sat in the doctor’s office, stunned. The prior week, while our two-year-old son Ethan played with his Thomas the Tank Engine trains at our feet, I had celebrated with my husband, John, my news that the pregnancy test was positive. It wasn’t as if we hadn’t had our challenges getting pregnant. Even before having Ethan, I had endured two miscarriages and emergency surgery due to an ectopic pregnancy, where I lost a fallopian tube.
My obstetrician, a particularly warm and caring man, detected my stress and put his arm around my shoulder.“It’s going to be okay, Meg. Whatever happens, you and John will get through it and it’ll be okay.” I forced a smile, and stared out the window the entire way home, recalling the day John and I had discovered that, although my pregnancy with Ethan was fine, our son would be born with ectrodactyly, my genetic condition. Back then, my emotional state was fragile, my priorities confused. Despite learning that our baby appeared otherwise healthy, I was consumed with the fact that our son, through the sonogram lens, was already not the picture of perfection. That day my own one-fingered, one-toed body felt numb, now understanding the phrase ‘world turned upside down’ like never before. My mother’s own words, “Life isn’t fair” came crashing like an unwelcome guest in my mind. But most of all, the most significant feeling I was experiencing was guilt. Unlike my parents, who must have wondered and stressed about which one of them caused this genetic mishap, I knew who was to blame.
But more than two years later, my attitude about having another child born with my condition was entirely different. Ethan appeared intelligent, beautiful and already receptive to the feelings of others, well before his time. Although I had certainly wondered whether Charlie, Ethan’s soon-to-be-born younger sibling, would be born different, I already had grown leaps and bounds. I knew enough that every day that we shared our lives with Ethan was precious and, most importantly, I knew (notwithstanding my own personal experience) that by having a child with a difference, Ethan had already taught me far more than John and I had taught him.
This week I posted a new Guest Flaunt written by a mother I have never met but already cherish, Anna Reyes. Her piece, “What We Feared, What We Now Know,” provided an honest and insightful account of her own experience in
learning that her (second) child was to be born with ectrodactyly, my own genetic condition and that of two of my three children. Her story instantly brought me back to my own when, at Ethan’s nineteen-week appointment, we learned from an ultrasound that our baby would share my genetic condition. As Anna described it, “My husband and I cried in the waiting room of the hospital while our five-year-old son looked at us with great concern.” After the traumatic news, Anna’s mind turned to a place that resonated with me…guilt. Despite knowing deep down she had taken care of herself throughout her pregnancy, her mind couldn’t help going down another path: “What did I eat? What did I NOT do to avoid this situation?” After a grueling few weeks of anger, denial and sadness, Anna and her husband accepted what was to come.
Anna’s beautiful daughter Tinsley is now 18 months old and is a “feisty, active and assertive girl….[who] loves to paint, dance and listen to music,” according to her mother. Having been in touch with Anna even before Tinsley was born, I, of course, was thrilled upon hearing how well Tinsley is thriving. But what caught my eye the most was when she added, “Do I worry about her sometimes? Yes I do. I am a mother after all. But just like my husband always says, we will deal with the situation. What’s most important is that we try to fill her life with love and support. Enough for her to feel that there is nothing in this world she can’t do.”
The timing of this Guest Flaunt was interesting to me, for it came the same week I featured nine-year-old Ezra Frech on the DHIFI FB page, who was born with femur-fibula-ulna syndrome, a very rare genetic condition that resulted in the amputation of Ezra’s left leg and relocation of his toe to his one-fingered hand to serve as a thumb. In addition to being physically beautiful, Ezra is a natural athlete (already setting seven national records), having just been named as one of the 2014 Sports Illustrated ‘SportsKid’ of the Year. Interviewed on television this past week, Ezra was perfectly comfortable speaking about his life experience to Ellen DeGeneres and millions of viewers. I also watched the YouTube video of Ezra uploaded in October in the hopes of getting the attention of Sports Illustrated (it clearly worked). Beyond Ezra, himself, however, the story revealed how amazing his parents have been for him. According to his Mom, “Ezra needs his parents to empathize with him…that we can feel the pain with him. But let’s also talk about all the great things.”
The earliest interview about Ezra I found was with Clayton Frech, Ezra’s father when Ezra was only four years old. Even then he stated, “The most amazing person I know is my son, Ezra. His wisdom, maturity and empathy reach a level far beyond his years. He is an old soul, and his emotional depth helps him navigate any challenges…..simply by living, he inspires others—from other children to 60-year-old men just learning to accept something unexpected that has happened to them.” And then, my favorite line from Clayton, “Ezra’s influence will defy stereotypes and promote acceptance of differences.”
As I was enjoying the high of seeing Tinsley flourishing and Ezra expounding on life, my joy was interrupted by a note from a mother named Monet who posted a public message on the DHIFI page: “I got the dreaded message that the teasing at school is in full swing. It’s not in her class but walking down the hall she is being teased to the point that she doesn’t want to go to school anymore. She’s only 5 for goodness sake. Her only worry should be which crayon she wants to use next. Our sweet girl is so smart and fully capable with what she was blessed with. Please help us figure out how to best handle this for her and her future.” The message was raw, and for those of us who parent a child with any type of physical difference, felt undeniably familiar. Immediately, I shared with Monet an article I had written on-topic to offer my own authentic guidance, I also reached out to a favorite elementary principal, Felix Gil, who kindly offered his own sage advice. Responsive and open to guidance, Monet reacted swiftly, planning to immediately partner with her own principal to ensure her daughter’s school experience would improve.
Through these recent Guest Flaunts, posts and tributes, I am reminded that the unconditional love and support of our children (regardless of their own unique version of difference) is the most important vaccine to any challenge our children inevitably encounter. By emboldening and empowering our kids to accept themselves and be their best, and being there for them to navigate things they don’t yet have the tools to manage, we inoculate them against external threats and bullies as well as internal doubts and self-criticism.
I used to think that my mom’s phrase, “Life isn’t fair” had to do with the fact that I was born with a physical difference. These days I have come to feel that what actually is unfair is when a child is born with a difference but without the unconditionally supportive and loving family they need and deserve.