In the next few years, Amir will need another surgery. Snell knows that many kids with HLHS end up needing a heart transplant.
“Right now he’s doing great,” she says. “But he’s never going to be out of the woods for heart failure.”
One of the hardest parts has been caring for Amir while balancing the needs of her other kids: Serenity, 16; Prosperity, 14; and Leland, 12. Snell’s mother brought the kids to see her while Amir was in the hospital.
Snell has since left her job to open a daycare. It gives her more flexibility for Amir’s doctors’ appointments. She’s active with the American Heart Association and cut the ribbon at the organization’s recent Heart Walk in Akron. Family members dressed in T-shirts printed with “In this family nobody fights alone” and carried Amir during the walk.
Tips for parents of a child with a disability
Find support. For parents who have a child with a disability, Snell says it’s critical to find support. She’s found solace in an online group of moms who have children with heart conditions. Having someone to vent and relate to is crucial for parents of children with disabilities.
Be an expert. Snell says it’s also important to be informed about your child’s treatment and care – and to be an advocate. Don’t be afraid to speak up, ask questions, get multiple opinions and do your own research. You should also be seeking out the best doctors available to your child and remember if you are not happy with the level of care they are giving your child, you have the right to switch. However, remember to let the doctor do their job.
Be encouraging. Remember to be encouraging to your child when things get difficult. Take the time to love, appreciate and uplift them as their parent in a way only you know how.
Be an advocate. “Be a part of the plan,” Snell concludes, “because at the end of the day, these babies can’t talk and they don’t know what’s best for them. You’re the one advocating for your child, no one else is going to be able to do that.”