The reality of being both parent and caregiver to sons with hemophilia
Despite the challenges, this dual role has strengthened my bond with my boys
Before I became a parent, I never imagined I’d be finding veins and accessing ports. But after my sons were born with severe hemophilia A with inhibitors, my husband and I quickly learned the basics of caregiving, by God’s grace.
Over the years, people have said, “Cazandra, how do you do it? I’m so sorry.”
I immediately respond, “There’s no need to be sorry. I do what needs to be done because I love my sons.” Being a mom is one of the greatest joys of my life.
However, being a parent is not the same as being a caregiver. Caring for a child with special medical needs involves additional responsibilities, and it’s important that people understand this reality.
Extraordinary challenges, extraordinary love
Parents of healthy children may visit a pediatrician only for checkups or the occasional earache or cold. But parent caregivers need to also visit specialists who can treat the child’s chronic condition.
In addition, many parent caregivers become experts on their child’s rare disease, with their knowledge about it surpassing that of many medical professionals. They learn the intricacies of the condition, read articles, attend workshops, and get involved in their local and national disease community to learn about new treatments and gather input from other families.
These parents must work to establish a collaborative relationship with their child’s providers. They must also practice constant vigilance and proactive management in order to care for their child. For hemophilia parents, this may involve monitoring bleeds, infusing medication, carrying detailed infusion logs, and taking pictures and videos to document symptoms.
Those who aren’t caregivers wouldn’t need the same knowledge or working relationship with medical staff.
Many parents juggle busy schedules and must often transport their child from one game or school activity to another. But parent caregivers may also need to work to find activities their child can safely participate in, and then watch and wait from the sidelines in case the child needs help.
Yet, despite the challenges, this dual role creates an unbreakable bond and a profound sense of purpose. In my experience, love for my sons transforms overwhelming caregiving tasks into acts of devotion. Being a parent caregiver is a journey of resilience, adaptation, and enduring love. It’s a testament to the strength of the human spirit and the boundless capacity of a parent’s heart.
Parent caregiving has allowed me to form a unique and powerful dynamic with my sons. Our life is marked by extraordinary challenges and extraordinary love. Through it all, my unwavering commitment to my children’s well-being remains at the core of my heart.
As a parent caregiver of almost 30 years, I have witnessed the good and the bad. Summer camp, new friends, and traveling to local and national conferences are some of the best parts of living with hemophilia. Painful joint bleeds, missed vacations, hospital stays, and surgeries are the worst. Regardless, every experience has taught me more about hemophilia and myself, shaping me into the person I am today.
For all of this, I give thanks.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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