For some of us hemophilia Moms we went through the time where we had to hold down our son to give him his factor or buy out the dollar store for him to be rewarded for his cooperation! Finally, we get to the point when holding down or rewards are no longer part of “factor time.” However, my 16-year-old son Marq brought me back to that moment where I wanted to threaten to hold him down or buy his cooperation…or punishment!
My son is a junior varsity basketball player for his high school. He has been playing basketball for the past six years. He has been blessed with no bleeds or regular athletic injuries (knock on wood and thanking GOD). Six years ago, it was a big decision for me to let him start playing in a recreational basketball league; being a daughter of a person with hemophilia I never thought sports was an option. I even had him look at pictures of people with a knee bleed so he could “understand” the risk he was taking. We’ve been very blessed, as well as very pro-active by making sure his factor days coincided with game days.Â
We were at the HTC for our yearly appointment before basketball season starts for JV. Marq is currently on a prophylactic schedule of twice a week. Basketball practice is every day except Saturday and most games fall on Monday and Thursday. Our HTC doctor gives “us” the option to increase our prophy dosing to three days a week to ensure his factor 8 levels stay high. I immediately agree with the doctor because it would keep us proactive in avoiding a joint bleed and he is starting to compete on a more competitive level. However, my son says, “No!” I look at him and I’m thinking to myself, “Did he just say, No!” We are in the room with the doctor and nurse, so I must control my tone and calmly make sure I heard him correctly. He says it again; shaking his head and looking me in my eyes saying, “No, I’m not doing that. I will stick with infusing twice a week.”
I try to explain to him how it might be smarter to infuse three days a week and he’s still shaking his head, “No.” That is the moment of frustration where I started to try to conjure up a bargaining tool! Do I tell him he can’t play basketball then? Do I negotiate with the offer of Xbox gift cards? The doctor and nurse must be judging me thinking my son doesn’t listen to me! I’m running through all my old bag of tricks in my head, when it hit me! It’s time for the bribery to stop and accountability to start.
I realized in that moment, not only was he advocating for himself, he was making a healthcare decision for himself; that only he could make. In two years, I’m not even going to be allowed in the room if he doesn’t want me there. He’s 6’1″, I can no longer hold him down to give him his factor. He, unfortunately, will be the one that suffers the joint bleed. So, I shook his hand and we made a deal, the doctor and nurse were my witnesses, that if he had any issues during this basketball season that he would have to increase dosing to three times a week for the rest of the season.
Thankfully, I can report that he stayed bleed free and injury free through this season doing it his way! As his mom, all I can do now is pray that his way continues to work for him.
Lovee lives in South Carolina with her husband, Charles, and her children, MaRee’, Marques, Laithan and Layla.
*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.
Word From Washington