“Hemophilia is the easy part.”
I realized that both my son and I have said this recently.Â There are many physical and emotional issues that we both face stemming from Max’s hemophilia, but the actual condition is not one of them.
I’ll say it again: “Hemophilia is the easy part.” I’m not even sure when the easy part came to be, but somewhere along the way, it happened. I recall saying to someone not long ago, “Give me a good old fashioned bleed; I know how to deal with that.”
As I watch families try to adjust to living with hemophilia — to see them live and learn, to twist and turn as life throws it’s constant curve balls — I realize how much of MY time has been spent making Max’s life as “normal” as possible. When he was experiencing day care, kindergarten, friends, school, sleep away camp, sports, driving, poor choices, good choices, and all the things that growing up is, I was experiencing first clinics, first bleeds, home infusion, insurance issues, pain management, fear, guilt and compromise.Â What I mean is that our kids are just trying to grow up and have the failures and accomplishments all kids should have, while as parents we have to learn to navigate this condition and still find a way to allow our kids to feel their own pain, make their own mistakes and have their own successes.
This road has not always been easy. Max had ankle bleeds for a while before prophylaxis was recommended so I always watched him run with this weird ungainly gait, knowing basketball would never be a sport he would play. Sleep away camp? It took three months of calls, letters and organizing for him to go to the 6th grade camp. The time he came home from high school with his upper arms completely covered in hematomas from kids punching each other I was ready to call the other parents about it, but he put a stop to it on his own. The first time he drove away alone was traumatic — for me. The first solo plane trip almost required sedation — for me.
Pain management can be a very slippery slope.Â In our bleeding disorders world, pain medications are not only accepted, they are encouraged; once anyone is introduced to the level of pain meds our community gets they walk a fine line.Â Max was just over a year old the first time he was given narcotics for a hip bleed, but it wasn’t until he reached adolescence that it became apparent how treacherous that slippery slope can be.Â We faced new challenges trying to balance his need for pain control with not giving too much of a good thing. Â I recall a session years ago when Max was very young where a young adult on the panel answered the question, “How do we raise them knowing they might get hurt?” with the answer “Let them bleed.” My response to the question of how to deal with pain would be “Let it hurt just a few moments more.” Or “Give them a little, not a lot.”
Max is officially an adult now and our connections and activities are vastly different than his childhood years. He is now friends with my friends, and not a kid any more. I ask him for suggestions and I discuss things with him instead of telling him what to do.
He gives back to this community in ways I, as a parent, could never do. He has the respect of many parents and the admiration of the younger kids. He advocates for his bleeder family and participates in fund raising. When we travel he is the one that follows the signs and finds the way. We’re struggling together to keep him insured, but he’s the one making the calls and filling out the paperwork. Somewhere along the way I became the support team, not the responsible party.
He still has bleeds, he still has pain, he still needs my support, and he’ll always be my son.Â But today the good news is, hemophilia is the easy part.
Maryann and her 21 year old son, Max, live in New Hampshire.
*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.