Sharing Our Hemophilia

I will never compare my bleeding disorder to my son’s – I will however share it with him.
It wasn’t until I had a pretty significant brain bleed that I even paid attention to the fact that I have a bleeding disorder, that wasn’t until I was in my fifties and my son was an adult. It was then I was forced to reckon with it. All the years of bruising, nosebleeds, menorrhagia and sore joints made sense, then also had to be addressed.
I didn’t know about hemophilia because I’m adopted, I didn’t know until I had my son and he was diagnosed with severe A, factor VIII deficiency. I didn’t pay much attention to my own low levels until I ended up in Neurology ICU with a brain bleed. When I was able to go home, my son did my treatments, it wasn’t anything I worried about because I knew I had my own expert at home, so did our treatment center nurse, she let the doctors know I would be fine getting treated because my son could treat me after I went home.
As a kid growing up my friends and I would count the bruises on my legs after a day of sledding or rough play, never thinking it was unusual because in those days, before I knew about the hemophilia, it was just my normal. I had “pre-bruises” where I would tell people, “I’m going to have a bruise there” and they would think I was crazy until a big bruise appeared. I would have sudden nosebleeds, extended healing from injury and getting through high school with heavy periods was always a challenge, but it was my normal.
Fast forward to the most recent years, now that I’m aware of the reasons for my big bruises, my never healing bumps and my random pains. I’ll complain to my son about some bruise or wound and he’ll say, “I know” or “imagine how it is for me” or something along those lines. He never discredits me, but he does make it clear that what I am feeling is multiplied in his world.
Not long ago I was having hip pain from doing a lot of walking so I asked my son, the expert, if he thought it could be a bleed. He asked for more specifics on the pain then said “yup, it’s a bleed.” When I asked him what he thought about my constant knee pain he said it was also probably from repeated micro- bleeds over the years. I have talked with a lot of other women in my situation, those of us formerly thought of as “just” carriers and they said the same thing but having my own expert saying it made me more able to accept it better than even if the Hemophilia doc had said it.
When it came time for us to grow up and apart it was him that would remind me, “you have to get used to it Mom, you’re leaving.” I am grateful I pushed him early to be independent with his own care, because of that he has been able to care for me when I needed it.
Our bleeding disorder has given us many shared experiences, friends, challenges and accomplishments. We have grown up together in this crazy world of bleeding disorders, learning how to care for ourselves and each other and because we share our genetics, we share our bleeding disorder.
Maryann and her adult 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 provider.