“How do you do it?”
“Isn’t it difficult?”
“Do you feel as though you need to wrap him in bubble wrap?”
“How do you handle all of it?”
Most bleeding disorders moms have had to answer those questions or something similar to them. Questions of that nature do not surprise me anymore, because what parenting looks like for me doesn’t fit most people’s definition of what normal parenting looks like. It’s interesting to consider the difference between ‘normal’ parenting to children with and without bleeding disorders. My ‘normal’ certainly isn’t a textbook definition of the word.
Unlike a lot of people I have met in the community, I had the family history. I knew the risks. I knew I was a carrier. Even though I was aware of these things, I was still required to go through genetic counseling while pregnant. I am sure it’s not normal to educate the genetic counselor on hemophilia, but it seemed perfectly normal to me.
Nicholas was born on a Sunday at 9:53pm. He was a healthy 6 pound, 7 ounce baby boy. There was not a bruise or mark on him. He was born at a local hospital with a normal delivery and no complications, which came with a sigh of relief. My OB/GYN was fantastic. She took a cord blood sample and had it sent to the lab for processing. That sample had to be sent via courier to a larger hospital with a coagulation lab. Since it was a Sunday night there were questions about whether the sample was going to make it to the lab or if they could even process it. Knowing this, I held my breath.
Two days later, we were discharged. As the discharge nurse was going over all of the basic discharge instructions she handed me a fax. She wanted to make sure we got it before we left.
That was the moment. I was not a doctor, nor was I a genetic counselor; I was a mom. I was a NEW mom. I was just learning how to care for a tiny little human. He needed me. He needed me to know what to do and I didn’t. I could read the results; I knew what they said, but I didn’t know what to do.
When I first read the diagnosis, fear ripped through me. I could barely breathe. I thought about my father and the things he had to endure. I was panicked about the kind of pain that my father deals with. I thought about the time spent in hospitals. In that moment, I realized that I had never seen my father ride a bike or kneel. He was never able to run around and play with my siblings and me when we were kids, but that was our normal. He wasn’t a “normal dad.”
Hemophilia is scary. It can be debilitating. At that moment of diagnosis, I had to make a choice: do I crawl under a rock and cry for days or do I pick myself and my family up, learn as much as I can, and continue to make this our normal?
While I still have many moments of fear and I still hold my breath at times, I know that we are so fortunate. My father is still alive and healthy. We have met so many lifelong friends. Nicholas is a happy, healthy, active, fun-loving 6-year-old. While he has to endure more than a normal 6-year-old does such as port infusions, learning peripheral infusions, bruising, questions about what that thing on his chest is, HTC visits, ER visits, and the such, we handle things, we adjust, and we move on. It’s our normal and yes, it’s difficult at times but, we do what every parent does: we do what we need to do and make the best of it.
Carrie lives with her husband Mark, and 6-year-old son, Nicholas, and 2-year-old daughter, Aleesia, in Maryland.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.