Niki is your typical 19-month-old toddler. Yes, she has a rare bleeding disorder, but it doesn’t define who she is. However, more often than not, people are interested in “Niki the bleeder” more than “Niki the toddler.” It’s understandable—her factor VII deficiency is fascinating—but she still plays, eats and has tantrums, just like any kid her age.
It’s not that I’m offended when people ask about her bleeding disorder; it’s just that I still want to swap stories about normal stuff. Mothering a little girl is new to me. I want to talk about mindless things like different ways to fix her hair or Niki’s rapidly emerging terrible twos. I am exploring not only HemoMommy Land, but Mother-Daughter Land, too!
I’m not without fault, though. I’m guilty of being quick to talk about what it’s like to raise “Niki the bleeder” because I like to educate people about her bleeding disorder. I enjoy dispelling misconceptions people may have about our community. (The infamous “girl bleeders don’t live past their first menstrual cycle because they bleed to death” myth is my favorite.) John and I also try our hardest to obliterate any residual stigmas that Ethan’s passing may have left behind.
A Scary Start
News of Niki’s diagnosis spread rapidly the day she was born. Instead of celebrating the joy of our first daughter’s arrival, John and I mourned the loss of any normalcy that our family had left. We were caught in a whirlwind of scary events, so I guess you could say it was partially our fault that things didn’t start off on the right foot. A lot of people were afraid for her because I had a vaginal delivery. I don’t mean to say we were sad when Niki was born, but honestly, we were scared for her life. We didn’t know what was going to happen in the hours after she was born.
Thankfully, things started to calm down in the days following her birth. Niki was transferred to a different NICU and had her Broviac® catheter surgery a few days after she was born. John and I slowly started to feel a sense of empowerment as we learned more about her treatment plan.
Unfortunately, we were starting to learn that some residual fear lingered from our initial panic. A very close family member asked me (right there at Niki’s bedside in the NICU) why I had another baby if I knew “she would be like Ethan.” Believe it or not, some of our family and friends were leery of holding Niki when she came home from the hospital. Others were terrified of seeing or feeling her Broviac. Never before in my life did I have to coax people to hold any of my newborns!
The more John and I started to sense fear, the more driven we became to educate. Our family and friends needed to understand her condition. If Kev and Boo (our sons) weren’t afraid of their sister, then no one else should be. So John and I began talking openly about Niki’s bleeding disorder. I even started blogging about our journey and shared the Web link with family and friends. Slowly but surely, open discussion helped normalize Niki and our family’s new lifestyle. Spreading knowledge actually did dissipate fear.
A Spitfire Is Emerging
Looking back, I guess I overlooked the fact that “Niki the bleeder” would sometimes outshine “Niki the person.” But I’m sure that order will reverse soon. Niki is getting older, and her true personality is starting to emerge. My daughter is an awesome little creature—already a determined little spitfire—and pretty soon my baby girl is going to be a strong young woman! She’ll probably impatiently sigh when I lecture her about adhering to her infusion schedule. She might even be unappreciative of my infusion logging diligence. One day she’ll probably politely tell me to “shut up” about her bleeding disorder already! And maybe, just maybe, she’ll look back and read all the little things I’ve written about her childhood and roll her eyes at that, too.
At the end of the day, she’ll be who she is destined to be. Bleeding disorder or not, she’s just a person. And I can’t wait to see her grow up and show that fact to the world.
Read more about Tiffany's life at The Art of Lion Taming.