My mighty warrior, Caeleb, still has an inhibitor. His Bethesda Unit (BU) is less than one and his half-life is less than four hours, so we have a ways to go. His BU has reached zero a few times, and I was thrilled! It was a victory, and when you live with an inhibitor you take every victory you can get.
Caeleb has been living with an inhibitor for over ten years. It’s been a long haul and honestly there were times that I thought things would never get better. Infusing on demand and having a two-year-old hooked up to a pump for 30 minutes at a time was not exactly easy but we made it work. Yes, that was our “normal.”
When the years of being in the hospital with excruciating bleeds came, our family shifted gears into hospital mode and my husband and I took shifts at the hospital, while keeping the home fires burning with our oldest son, and working as much as we could through each admission. I look back on those times and think of the nights Caeleb would actually sleep. The beeping monitors kept me company and so did my “bleeding folk” community online. Facebook was my lifeline.
Bleeding Disorder Awareness Month is about getting the word out to those who are not affected. We need them to know who we are and that our physical, emotional, and financial struggles are real.
What I have learned over the 20 plus years I have been in the bleeding disorders community is that I have never been alone. Yes, I have my amazing husband and sons, but I also have you, the community that has answered my phone calls, emails, and messages on Facebook in the wee hours. You never judged me when I asked a seemingly “stupid question”, and you all were sometimes the only ones that kept this “Mama Bear” going! Thank you.
So I challenge you to not only think about Bleeding Disorder Awareness Month as for those who are not affected, but for all of us. It is a time to celebrate our amazing community.
Our stories are different, but the same, and to each and every one of you this March, I give you a virtual hug: A hug for living through the painful, terrifying, and even gratifying moments of bleeding disorders.
Thank you for being my family.
Cazandra lives with her husband Joe, and 20-year-old son, Julian, and 10-year-old son, Caeleb, in New Mexico.
*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.