Meet Kelly from Nevada, who has von Willebrand Disease (vWD) and Delta Granule Storage Pool Deficiency. Kelly has a 19-year-old daughter, Jacey, who has the same diagnosis as her mom; a 7-year-old daughter, Maddie, who has vWD, three sons, and a husband.
We asked Kelly to share some insights on her life as a caregiver.
What is your day-to-day schedule like?
Each day has its own challenges. As a woman with a bleeding disorder and a mother of children with bleeding disorders, our schedule is a little different! With one on prophy, and the others on demand we have a scattered routine. We try to keep to a ritual as much as possible but with active children, sometimes even the best planning ends up with unexpected incidents! The best we can do is every day wake up, get ready for school and work and keep a positive attitude, and support one another. That is the consistency in our schedule!
What are your concerns for your daughters?
I live in a constant state of vigilance. Since hitting a road-bump with insurance in 2013, we have remained even more vigilant about documentation and advocating for our care and access to treatment, than ever before. My biggest concerns are the ever-changing networks of providers, medical and pharmaceutical exemptions, and barriers to caring for children with chronic rare disorders and diseases. As a community, I think we need to have increased vigilance, stronger voices, and a more assertive presence with lawmakers who determine how our healthcare is run.
What are your concerns as a caregiver for yourself?
I am very attentive to the medical needs of my family and especially my affected children. Sometimes we forget about self-care and I have medical conditions as well. My biggest concern as a caregiver is finding the time (or making the time) to just breathe, and take a moment to care for myself so that other things don’t overwhelm me. Finding that time is important!
How do you ask for help if needed?
I feel very blessed to have a connected network of friends, family, and community members who I can reach out to as well as my provider who is very in tune with me and listens well. If I need help, I reach out to these support systems and ask! We should never be afraid to ask for help be it financial, medical, emotional, or physical…we need to know we can count on one another.
Do you get to take time for yourself?
I try to take time for myself and/or my husband and me. We try at least once a month to take a few hours away from everything and just relax!
How do you juggle it all?
Juggling 5 kids, a job, volunteerism, and our health takes an actual village. I am certain that I could not be a successful mother, spouse, or teammate if it weren’t for my amazing network of support. It takes a village and my village is pretty amazing!
In honor of National Caregiver Month, we’ll be featuring “Caregiver Heroes” throughout the month of November. While all in the bleeding disorders community are heroes in their own special ways, these folks are being given a special shout-out for the ways they take care of their loved ones and themselves.