From across the yard, I can see the sun illuminating the sparkles on her Minnie Mouse shirt as she plays in an area of earth that I’ve dedicated as our family vegetable garden. Her strawberry-blonde hair blows gently beneath her cornflower blue sun hat in the warm early spring breeze as she darts from the soon-to-be garden across the lawn to her next destination — a rambling evergreen bush in desperate need of a trim. As she runs by, she looks up at me with her sky blue eyes and rosy cheeks; a broad smile painted across her two-year old face. A while later, she makes her way back up to where I’ve been sitting and gifts me with a handful of barren sticks. She then utters a single word — one that melts my heart several times a day — “Mommy.”
Although less than a month old, she’s ready to start exploring the world around her. As she lounges in my lap, her sapphire blue eyes, now ready to welcome the light of day, survey her surroundings — the recessed lights on the ceiling, the beige walls of our living room and, finally, my face. She stares at me in wonder. As she intently studies the features of my face, I wonder if she knows that I’m her mother, how much I love her and how much she was wanted by her father, sister and I? She gives me one of her trademark newborn grins — one that has either been provoked by some fleeting tummy troubles, a pleasant dream or an actual emotion. With two days to go until she’s completed her first month of life, I smile back at her without a care in the world.
For almost two years, I’ve turned to them with questions and concerns. Ever the faithful friends, they’ve always answered me honestly and sincerely. Whether I’ve needed to vent about mental, emotional or physical woes, they were always there to lend a supportive ear or virtual shoulder to cry on. Every morning I log onto Facebook to give my own support, congratulate those who have surpassed milestones and cheer on others who are just beginning their own battles. We’ve celebrated many happy moments and mourned those that have taken away our innocence, our naivete. We all share a common bond — NAIT — a disease that few are afflicted by, but many dare to overcome.
These are the faces of NAIT, a disease, that like others, doesn’t discriminate. These are the babies, the children, the mothers, and the fathers challenged to face a disease they didn’t bring upon themselves. As of today, there is no easy cure or quick vaccine to take the pain away — just the hope that the devised treatment options will be enough to spare the lives of our unborn children. Like the unpredictable path of a tornado, we still don’t have many explanations as to why some children bleed, while others can sustain low counts without complications. So, we lean on each other knowing that our special bond spans countries, oceans and continents.
After logging on to Facebook earlier today, I was inspired to familiarize you, dear readers, a bit more with some of the faces of NAIT. There are one-hundred and thirty-nine members of our Facebook NAIT Support Group — a number that rises each day as other parents find their way to our growing circle of friends. The group serves as an all-in-one sounding board, brag book and social lounge. Today, there was good news from some new moms, like myself, whose treated pregnancies yielded babies who were born with high counts and little to no complications. There were also questions from others who are concerned with the exact same issues that I questioned during my pregnancy — side effects from the prednisone and IVIG, insurance coverage, ultrasounds, PUBS, c-section dates, etc. Still there were some parents who needed to vent frustrations — frustrations with themselves, with others, with the disease. The board is active, it is ever-growing, it is home to so many, like me, who don’t have the luxury of having a fellow NAIT parent nearby . When no one understood exactly how I was feeling before and during my pregnancy, I knew they would. When I needed an extra bit of motivation to make it through another ultrasound, another prenatal test or another obstacle, they gave me encouragement and strength without reservation.
So, tonight, I’d like to take some time to honor those parents who have suffered the loss of pregnancy innocence — a loss that I, too, suffered after I miscarried my first pregnancy. To us, pregnancy is not a carefree time of celebration, but one of worry, anxiety and concern. We cautiously expect from the minute that second pink line appears, peer just a bit longer at that screen during our ultrasounds, and confront each pregnancy milestone as it comes. We hope that others can understand our reservations, comfort us when we need a little extra reassurance and are sensitive to those of us who aren’t fortunate enough to carry “normal” pregnancies.
So, what have I learned from being a face of NAIT? Well, too much to get into at this late hour, so I’ll save that for another post. But, what I can tell you is that I’ve learned to take a little extra time to appreciate those barren sticks Clara proudly puts in my hand and the little baby grins that Elyse flashes my way. These are the faces that NAIT has given to me and I wouldn’t trade them for anything…even a carefree, worry free, and stress free pregnancy.
For more information on NAIT and to get a closer look at other families, like ours, who have been afflicted by this traumatic disease, please log on to www.naitbabies.org.