One of the ways many moms have learned the most about raising a child with hemophilia is by talking with our community’s “Blood Brothers,” the guys who have grown up and moved away from home, whether they be in college or have grandchildren of their own. These men are able to give it straight about what growing up with a bleeding disorder is like and how and what their mothers did to make it better (or in many cases, how their well-meaning, but meddling mothers, got on their nerves!) The stories and real life examples are invaluable.
This week’s entry to “Infusing Love” comes from that perspective: Rich Pezzillo is the Executive Director of the New England Hemophilia Association and has moderate hemophilia A with an inhibitor. Having seen Rich and his family together, we can attest to the love they have for one another. Rich shares the lessons he’s learned from his mom with us in today’s post.
“Where is your medical alert bracelet?”
“You shouldn’t do that; you might get a bleed!”
“How did you get that bruise?”
“Did you infuse yet?”
“You’re making my hair turn grey!”
“I worry because I love you.”
Growing up these were the words and phrases that were common around my house, and ones that I couldn’t stand hearing.
My mother certainly had her hands full having three boys living under one roof (well, four if you include my father). My younger brother and I were diagnosed with hemophilia as children, so adding a chronic condition to the mix meant there was never a dull moment.
When I look back at my childhood, there were countless times when I knew my mother’s blood pressure went through the roof as she dealt with things like: me being hit in the head with a softball during T-ball practice, receiving a call from the school principal that I fell off the playground monkey bars and twisted my ankle, or me yanking out a tooth because I wanted money from the Tooth Fairy (four stitches later and a hospital stay, this was clearly not worth the lousy three dollars I got).
My dad always deferred to my mom when I asked to do anything that was considered risky.
“She’s the boss of the house, so it’s up to her,” he would say.
When her answer to my request or suggestion was “no,” I would get angry and lash out. I often thought about how much I hated having hemophilia and how much it was stopping me from doing what I wanted to do. Without realizing it, I placed a lot of the blame on my mother, because I knew that she understood me.
Once I even said to her, “I hate the fact that you gave me hemophilia.” Reading those words as an adult, I realize how hurtful they were. I obviously didn’t mean it, but sometimes when you’re in pain you say things without thinking and take it out on the people you love the most. My mother is a strong Italian woman who rarely cries in front of anyone. When I said this to her, I remember her breaking down in front of me. There are not many things in life that I regret doing or saying, but this is still one of them.
One regret I don’t have is that I chose to go to college five hours away from home. Since I was the first generation to go to college, my family was thrilled. However my mother would say over and over again, “Do you have to go that far away? You know you can save a lot of money by going to a school that is closer.”
Although there were a lot of growing pains when I ventured off to college, to this day I still consider it one of the best things I could have done for my family and for myself. Let’s face it, college is a difficult transition for anyone, but having a chronic condition like hemophilia, makes it that more challenging.
During my first semester, I quickly had to take the tools my parents had given me and learn how to advocate for my own needs. Mom wasn’t there anymore to remind me to infuse, to drive me to the hospital in the middle of the night when I had a bleed, to unpack my factor that was delivered once a week, or organize my ancillary supplies. I never even thought about these things when I was living at home, but I soon realized how much I took for granted all the little things she did for me.
There were many nights I called my mother to cry about how much pain I was in, or how much I wished that I didn’t have hemophilia. During these difficult times, I always thought about how tough this was for me, how much pain I was in, and how unfair it was for me. Sure, I had friends to help me, but I made the situation all about me. What I didn’t take into account was how much this was affecting my mom and how helpless this left her feeling.
My dad and I recently had a conversation about this, and he told me how little sleep my mom got when I was in the hospital and the toll it took on her.
Now that I am an adult, I realize what the term “unconditional love” truly means. When my mom tells me not to do things, she isn’t trying to stop me from living my life (something I thought she was doing growing up), she is protecting me from something she has no control over – hemophilia. Everything she says and does comes from one place – love. She truly wants what is best for me.
My parents always told me growing up, “We’re going to make mistakes and so are you. Sure there are countless books to read about how to raise a child with hemophilia, but there is no manual on how to raise you.”
I think my parents did a pretty good job raising three boys who are all successful in their own ways. My brothers and I have certainly learned lessons about love and trust from our parents, especially from our mother. I know I won’t fully understand the love a parent has for their children until I have my own. However, I can only hope that I will be half the parent that my mother was, and continues to be to me.
I love you mom.
Rich lives in Rhode Island.
*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.