Raising children with rare diseases is an exercise in balancing priorities. Doctor’s visits and dosing of medication have to be fit in between homework and sports. For moms, one priority that can often fall by the wayside is their own health and well-being.
Stephanie Smith is familiar with the seemingly endless cycle of parenting and caregiving duties that can leave parents themselves off the list of priorities. Like her two young boys, Stephanie has hereditary angioedema, a rare condition that can cause painful swelling attacks in different parts of the body. The attacks can be brought on by stress, so even though she’s been able to control the condition with the help of medication, Stephanie has been taking steps lately to focus on her well-being.
“I like to read, I like to run, I like to exercise more and that’s now rolling over to my family because they see mom’s getting healthy so they’re getting healthy,” the registered nurse and CSL Behring patient advocate told Vita.
Stephanie’s strategy to minimize stress is in-line with life coach Denise Brown’s advice for family caregivers. Activities like working out, reading, yoga or anything else that keeps caregivers “present in the moment where you feel yourself again” are good things, she said.
“It’s the break from the worries, in essence, that we’re creating when we take time for ourselves,” Brown said in a phone interview.
Brown, who specializes in family caregiving and founded the website caregiving.com, added that parents of children with significant needs need to form a network of support in order to give themselves a chance to lessen the load.
“Sometimes it’s not a burden, but it’s an opportunity,” she said. “It’s an opportunity for others to be of service.”
Facebook groups and disease-specific organizations are a good place to start in order to build that support system, Brown said. And once external support is in place, she advises that moms take time for themselves without regret.
“You feel so guilty when you are not completely present for someone who has significant needs,” she said. “However, if you don’t take a break from it, it will break you.”
Annette Gregory, a mom of six, including Baylee, who has a primary immunodeficiency disease, told Vita at a recent summit of CSL Behring patient advocates that she sees the time she spends advocating on behalf of Baylee’s condition as time to take a mental break.
“Even though I’m doing something for her, and for the PI community, it’s still a time for me to regroup and figure out how I can be a better mom when I come home,” she said.
With her kids ranging in age from 28 to 10, Annette says it’s getting harder to get them all together at once. She relishes those all-to-brief moments when she’s able to spend time with all of her children. By taking some time to herself, she’s able to enjoy the ordinary times as well.
“Mother’s Day is one day, but every day is Mother’s Day to me.”
