My baby with hemophilia just turned 12. I think about how lovely it could be to keep him a snuggly little boy forever, but it just isn’t going to happen. He’s growing up and he’s his own person.
As a family, we’ve discussed a fair bit about how your body is your own. With my son, a lot of this has been centered on teaching him independence so he gains confidence in self-infusing. However, my ultimate agenda is a bit deeper. I hope to reinforce with him how important every decision he makes is with regard to his own body.
You see, my fear, hope, dream, worry, reality is that in the near future it is likely there will be active clinical trials for new experimental hemophilia treatments and even genetic trials. I see the writing on the wall here; my baby will be the “dream candidate” for researchers: young, healthy and only had exposure to one product. He’s going to have to make some very big decisions and I won’t have a say because he’ll be 18 years old.
A research coordinator stopped by to ask if Benny would like to take part in a research study. Yes, we’ve been there and done that, many times! When the subject has been raised in recent years I’ve turned to Benny and described to him what the researcher was asking and explained that I was agreeing or disagreeing to have him participate. This year, it all changed. She wanted my consent, but she also wanted him to provide his own consent as well. Benny looked at me. I swallowed hard, smiled and said, “Hey, it is your body, what do you think?”
Here’s where my heart celebrated and did a few cartwheels. Benny asked questions. Really good questions about what exactly she wanted to do, why she was doing this and what would be done with the information. He is 12 and didn’t understand her technical answers so he asked more questions. She pushed a little, clearly not experienced speaking about her study in “kid language”, but Benny adamantly refused to sign until he fully understood. At one point in the fifteen extra minutes she spent speaking with him, the researcher looked over at me with an exasperated look and said, “He’s very curious and tenacious, isn’t he?!”
He sure is! I was utterly delighted! That unrelenting demand for answers drives me crazy at home sometimes, but darned if it isn’t exactly what I dream for him and his other bleeding disorder buddies to be when they reach their own age of consent. Am I still worried about the decisions he will be faced with in the future? You bet. Am I going to keep the dialog open about being smart, asking questions and teaching him about owning his own body? Absolutely. Do I feel a bit more confident that he’s going to make well thought out, informed decisions? Sure do!
Kimberly lives in Wisconsin with her husband, Howard, and boys Ben (12) and Johnny (9).
*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.