I love awareness months. I look at each one as an opportunity to educate myself about other conditions, causes, and to be a voice about something that affects you or a loved one personal. I like to share what our family deals with, not for sympathy, but in the hope to raise awareness.
March is not only my son Jackson’s, birthday, but it is also Hemophilia Awareness Month. I tell him it’s his month. What kid wouldn’t love to hear that?! I tell him it’s a month all about hemophilia and raising awareness of what he and his “blood brothers” go through. He just turned six. I’m not sure he grasps all of that, but for now, I’m his voice on social media and in our community.
I’ve approached the past six years of Hemophilia Awareness Month with zeal, at first. I try to share as much as I can about bleeding disorders and our community on my personal Facebook page. But then life gets crazy and I skip a post or two … or more. It doesn’t mean it’s not important or that hemophilia has gone away; it just means we busy living life. That’s a good thing. In fact, the more I think about it, I think I post less during March than I do during the whole year. And here’s why…
I treat EVERY DAY like it’s Hemophilia Awareness Month!!
I don’t post 365 days of hemophilia facts, but each day I do share relevant information about hemophilia, how it affects my son, our family, or our community. I will post it all. The good, bad, and ugly (and yes, bruises and bleeds sure are ugly). I don’t paint rosy pictures and I’m not a Debbie Downer; I’m a realist. You want to know about hemophilia? I will tell you about it.
Here’s my reasoning: awareness months are great. But what happens after the last day of a particular month? The awareness fades away. People forget about it and move on. That’s how I am…I may learn 30 days of a particular medical issue, but if people stop talking about it I forget about it. On the flip side, if I treat every day as a potential awareness day it stays on the forefront of people’s minds. It makes people read about it more often than just 30days of a year. Talking about it makes it relevant. It helps people understand about bleeding disorders, or at least know a little more than they did. It creates understanding and compassion. I am not trying to be that person who constantly posts about the same subject, which may lead you to just scroll through without paying attention. However, if I educate just one person, I count it as a win for the bleeding disorders community.
This March, I’ll wear more red, decorate my front door with a red wreath, and continue to share daily facts from the HFA Facebook page. I will also continue talking about hemophilia way after the month is over. I will continue to spread awareness with every opportunity that arises. You never know who just might be listening!
Jen lives in Ohio with her husband, Joe, and their three children: Evelyn (19), Nora (12) and Jackson (6).
*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.