As a parent of a child with hemophilia, it is quite often difficult to find something about hemophilia for which you are thankful. Let’s be honest, for all of us, at times, it can be difficult to sing the praises of hemophilia.
Thankfully, there are also days that you realize the multitude of unexpected blessings. For me, I have found one of the largest blessings to be the friendships and relationships I have formed within the hemophilia community. We (or I) have met people from all over the country, and from all walks of life with all kinds of life stories. What they all have in common is not just hemophilia, but strength, resilience, and fortitude that I’ve never known.
I think we’d all agree that these friendships and relationships are a blessing, but the bigger gift is how hemophilia has shaped our children into these amazing human beings. At 12, my son, Nicholas (who has severe hemophilia A), feels defined by hemophilia. I have to remind him what our HTC nurse told us not long after the diagnosis—he is NOT Nicholas-the-hemophiliac. But rather, he is Nicholas, who just happens to have hemophilia. Hemophilia is not what defines him; but it certainly has helped shape him into who he is.
He probably wouldn’t want me to share this with everyone, but Nicholas really is sensitive and compassionate well beyond his twelve years of age. I’ve known that for a long time, but witnessing those qualities is so rewarding as a mother.
Nicholas lives to play baseball. If you were to ask him what he wants to do when he gets older, he’ll tell you—to play in Major League of Baseball. He has big dreams. Over the years, he’s played on several teams but there has been a group of six to eight boys that have stayed together through the various team changes. Those boys are his closest friends. They go to school together and spend most weekends together at the ball field. They’re what we call baseball family. It’s an unspoken code among these parents that you feed and reprimand all boys just like you do your own. The boys, and parents, spend a lot of time together and form close connections.
In January, one of his teammate’s mothers was diagnosed with breast cancer. She felt a lump and went in for a mammogram. She had a bad feeling about it and was not surprised with the diagnosis. I was shocked; she’s only 35. Our family has been so fortunate to not be affected by cancer. This wasn’t supposed to happen to someone so young and to someone we’re so close with.
We initially kept the news to ourselves and did not share it with Nicholas. We wanted his friend to share it with him when he felt the time was right and he was comfortable. One evening we were sitting down studying and he told me that his friend told him a secret and that I couldn’t tell anybody. I knew what was coming. While it was difficult, it was a great opportunity to have the conversation about being a good friend and about being there if his friend wanted to talk and that he could always talk to me about it, but he shouldn’t disclose it to his other friends.
Our friend began chemo right away. Leading up to the start of chemo, we talked about her concerns of how her sons (she has two, one Nick’s age and one younger) would handle her hair loss and how she would handle it. She decided she wanted to be proactive and shave her head before she lost her hair. I like to think I would do the same and lose my hair on my terms—mad props to her! I shared her concerns with Nick so that in the event that his friend talked to him about it he wouldn’t be surprised but also so that he could be encouraging and remind him that his mother is beautiful—with or without hair.
When I told Nick that his friend was going to shave his head along with his mother, I knew his response before he said it. “I’m shaving my head, too.” I couldn’t help but cry. I asked him if he was sure, but I knew he was. I knew there was no way that he was NOT shaving his head. At that point, we went into party planning mode. We said if they were shaving their heads, we were going to make it as fun as possible. Before we knew it, we had about ten pizzas and lots of family and friends over for the shaving party. At the end of the night, three boys and another Dad shaved their head in support of our friend. More shocking? None of us cried!! Every time we thought about why we were there and the amazing thing these boys were doing to support her, we ate more pizza and found something to laugh about. It was a great night.
After Nick was sleeping that night, I went in his room a few times and after doing a double take looking at his head, I sat on the floor beside his bed and cried. Not because I was sad that he had a bald head, but because I was overwhelmed with pride. I think we all know or remember that around that pre-teen age kids can be just a tiny bit selfish on occasion. And I think boys might be more vain than girls. Knowing that he did something so selfless—when he admittedly loves his hair—I was overwhelmed. Then I realized that as much as I’d like to take the credit for him being such an amazing little boy, I knew that I couldn’t. I didn’t teach that to him; hemophilia did. It taught him to have compassion and empathy for someone going through an extremely difficult medical condition and to understand the difficulties of feeling like you looked different than other people or that you were different from everyone else because of this medical condition. Those are all things I’d like to think that I taught him but I know that I really didn’t. Because he couldn’t fully understand it until he lived it.
When Nicholas got up the next day, I asked him if he regretted doing it. He said “Not for a second. I’d do it all again in a heartbeat!” Almost 12 years ago, when Nicholas was first diagnosed, I never in my wildest dreams thought I would be saying this, but what a blessing hemophilia has been in our lives. I’m so thankful for the wonderful people it’s brought into our lives, but also the wonderful person that it’s made my son.
Thank you hemophilia.
Tracy, her husband Lance and son Nick (12 years old) live in Virginia.
*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.