By Sandy Smith
Celebrating victories, advocating for their children and crying in the bathroom are realities for caregivers of those with bleeding disorders. Four moms of children with bleeding disorders shared their stories in the Saturday session, The Caregiving Journey Across Ages and Stages.
The goal was clear for those attending: Understand that you’re not alone. “In this room is more knowledge than any doctor’s office in the world,” said Samantha Nazario, who moderated the panel and is the mother of a child with Von Willebrand disease.
“It’s about community and getting to know the people who will help you through those times,” said Cazandra Campos-MacDonald, a mother of two sons with severe hemophilia A. “Sometimes our related family doesn’t get it. If you leave this conference with one email or phone number or Facebook, you’ve had a successful conference.”
Lauren Holomalia, mother of a son with severe hemophilia A, learned of the diagnosis while her son was in utero. “When I was still in the hospital, we had a family from the chapter come and visit me. That was so helpful. As a new mom, you worry about, what’s their life going to be like in five years, 10 years? That started my drive for wanting to be in this community right off the bat. It was so helpful in such a vulnerable time for me. That empowered me to keep moving forward.”
Erica McLeod, mother of three sons with severe hemophilia A and an unaffected daughter, talked about building a sense of normalcy into tasks like infusing. “It’s easier when you have multiple kids with hemophilia. The first one was hard. The second one, when it came time to infuse, just stuck his arm out. My third son just thinks everybody does this at home because we do this at home.”
The women bluntly discussed the need to fight with schools to advocate for children, and difficulties with relatives who don’t understand – and sometimes don’t want to. They discussed their own fears – and those previously mentioned bathroom tears. They talked about dealing with playground activities, too, such as a desire to play dodgeball or peer pressure to play football.
But it circled around time and again to the power of community, and the need to get involved and share stories with those who are a little newer to bleeding disorders.
“I had one mom 27 years ago who called me and said, ‘He’s going to be OK,’” Campos-MacDonald said. “Two years later, my pediatrician called me and said, ‘I have another baby diagnosed with hemophilia. Can you call?’ So I paid it forward. That is one of the most important things we can do for each other as caregivers.”
During the audience question-and-answer-period, one mom of a newly diagnosed child shared how she was uncomfortable disclosing her child’s diagnosis with anyone. She was urged to do so, to keep the child safe, but also was encouraged to take the time she needed to make the decision. At the end of the session, she was circled by other caregivers, all offering a phone number to call if she needed someone to talk to.
The power of community can lead to finding a voice, advocating not just for your child but for the broader bleeding disorders community. “Do not silence yourself for anyone,” Nazario said. “As your children get older and see the sacrifices you make, they’ll stand beside you and make those sacrifices to share their voices.”
