For Rosemary, caring for her Warrior inspired her to create a space for caregivers to nurture their own mental health.
“You need to take care of yourself to be able to take care of your Warrior.” And that's exactly what Rosemary did for herself and her daughter for 29 years. Although her Warrior passed away in 2019, her dedication to supporting Warriors and caregivers has continued through her foundation.
“You need to take care of yourself to be able to take care of your Warrior.” And that's exactly what Rosemary did for herself and her daughter for 29 years. Although her Warrior passed away in 2019, her dedication to supporting Warriors and caregivers has continued through her foundation.
As a young mother, Rosemary was unprepared for the reality of caring for a child with sickle cell disease (SCD). When her daughter was born, Rosemary was told she had the sickle cell trait. “I didn’t know anything about sickle cell, I didn’t know what that was,” she says. “So we went on about our lives.” After months of clinic visits for swelling, her daughter was diagnosed with sickle cell disease.
As her daughter grew up, they each took it upon themselves to educate whoever they could about sickle cell disease. “You know, she’s in the hospital educating nurses and doctors about the condition that she lived with,” Rosemary says. So Rosemary set out to learn as much as she could about sickle cell disease and share that information with other caregivers. Her Warrior’s doctor noticed how invested she was and told her, “I think you’d be a great fit for starting a community-based organization to help other parents and families through this.” For the last 13 years, Rosemary has run a nonprofit dedicated to supporting caregivers and families of Warriors across the country.
“You love your child, you would do anything for them.
But it really is a heavy load on the parent, and you
don’t want your child to feel as if they’re a burden.”
“You love your child, you would do anything for them. But it really is a heavy load on the parent, and you don’t want your child to feel as if they’re a burden.”
Balancing life as a mother and a nonprofit director hasn’t been easy. Rosemary came to realize that she had spent so much time taking care of others that she had neglected to take care of herself. “You don’t, as a parent of a child with sickle cell, get that rest,” she says. “You don’t get that release.” She sought out other foundation directors who were also caregivers and parents of Warriors to create a space for them to show compassion to each other—and to themselves.
Balancing life as a mother and a nonprofit director hasn’t been easy. Rosemary came to realize that she had spent so much time taking care of others that she had neglected to take care of herself. “You don’t, as a parent of a child with sickle cell, get that rest,” she says. “You don’t get that release.” She sought out other foundation directors who were also caregivers and parents of Warriors to create a space for them to show compassion to each other—and to themselves.
For the last 3 years, Rosemary has offered a retreat where caregivers can be open and honest about the challenges they deal with every day. Caregivers can talk to a mental health specialist, get a massage, and simply turn all of that care back on themselves for a few days. “We talk about life despite sickle cell, because sometimes the parents tend to limit what they may have wanted to do in life because they’re spending so much time dealing with this child with sickle cell,” Rosemary explains.
For the last 3 years, Rosemary has offered a retreat where caregivers can be open and honest about the challenges they deal with every day. Caregivers can talk to a mental health specialist, get a massage, and simply turn all of that care back on themselves for a few days. “We talk about life despite sickle cell, because sometimes the parents tend to limit what they may have wanted to do in life because they’re spending so much time dealing with this child with sickle cell,” Rosemary explains.
Even though her daughter is no longer here, Rosemary still advocates for Warriors and their caregivers with everything she’s got: “I have not lost passion for all things sickle cell, and making sure that those living with it are able to live their best life.”
Even though her daughter is no longer here, Rosemary still advocates for Warriors and their caregivers with everything she’s got: “I have not lost passion for all things sickle cell, and making sure that those living with it are able to live their best life.”
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