When I am toting around my two preschool aged boys to kids activities or the store, I typically get the comment, “You have your hands full.” I reply with a smile in agreement, but in my mind I respond, “If you only knew.” Recently when someone opened heavy doors for me as I struggled with my double stroller, I smiled and thought for the first time, “My hands are full, but so is my heart.”
In addition to having two boys, one with hemophilia, I have mild hemophilia. Balancing my own chronic condition while taking care of my sons is still a work in progress. How am I supposed to take time to infuse regularly and get ahead of the pain or bleeds, when I hardly have time to myself at all? But for the first time, I am starting to ask for help.
It wasn’t until my youngest son, Christian, was born that I found out I have hemophilia. Past injuries that were slow to heal (or never completely healed) now make sense. I was in a car accident years ago that caused severe pain in my right hip and sacroiliac joint (SI joint). I tried steroid injections and years of physical therapy, but after multiple MRIs it was evident that I had some torn ligaments and joint damage. Once my factor levels were determined to be low, my hematologist recommended that I follow up with an orthopedic doctor. The orthopedic doctor told me that the joint damage in my SI joint and hips is significant, and that my 32 year old joints look more like that of a 60 year old.
That conversation led me to seek treatment for the microbleeds I was experiencing regularly in these target joints. Finally after years of not knowing what was happening to my body, the mystery of ongoing pain was explained. I began an on demand infusion treatment plan for physical activity or pain. Change, and a new diagnosis, can be challenging to accept and I find myself having a hard time adhering to the infusion plan as I should. The demands of a busy life and motherhood sometimes trump my good intentions of taking care of myself; in the past, I’ve had to block out the pain, not knowing the root cause. Now that I know my diagnosis and how to treat it, I recognize that I have to prioritize myself and my own hemophilia needs, too.
I’m sure I am not alone in feeling overwhelmed daily with the regular demands of motherhood, which is topped off with managing my own and my son’s bleeding disorder. I remind myself of how fortunate I am to have an amazing support group within the bleeding disorders community and how blessed we are to have access to treatment. However, I think it’s important to also give yourself, as a mother, the grace of not being perfect — especially in regard to balancing motherhood with additional demands of a chronic condition for you and/or your children. Let’s be real: motherhood is challenging and so is hemophilia. While I may not be a perfect mother or hemophiliac, I am doing the best I can.
As mothers, we know that while our hands our full, so are our hearts. For Mother’s Day, I hope you gave yourself some appreciation: not of what you’ve accomplished or your future goals, but the appreciation of the beautiful gift you are — simply being you.
Samantha lives in Texas with her husband, Alex, and boys, Adoniah (4) and Christian (2).
*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.