Few people actively prepare themselves for what it would be like to parent a child with special needs. If that diagnosis does come, it can be difficult to navigate on your own, says actor Colin Farrell.
“One thing I would say is reach out. Find support,” Farrell tells TODAY in a new interview. “Only you will ever know truly what it is to feel what you feel, but you will recognize yourself in the struggles and triumphs of others when you hear their stories. You are not alone.”
The topic is deeply personal to Farrell, whose 14-year-old son, James, has Angelman syndrome. According to the Mayo Clinic, Angelman syndrome is a rare genetic disorder characterized by developmental disabilities, neurological problems and occasional seizures. It is often misdiagnosed in young children as autism.
After his son’s diagnosis, Farrell found fellowship with other parents of children with Angelman syndrome. Many of them come together in Chicago for an annual gathering and gala, which Farrell says always gives him hope and inspiration throughout the rest of the year.
“The gala simply represents the best of humanity for me," he says. "A world of love and compassion in the face of great struggle and ultimately a song to the fortitude of the human spirit.”
Within that community, Farrell says they also have the opportunity to celebrate their children’s wonderful accomplishments—such as when his son took his own steps just before his fourth birthday, which he previously spoke about with InStyle.
“We share in the smallest victories; the first words at age six or seven, being able to feed oneself and getting the seizures under control,” Farrell said in 2012. “When James took his first steps at age four, I nearly broke in half!”
That kind of fellowship is important to all parents, but especially when your child’s experience isn’t widely represented. As Farrell says in his latest interview, he may not understand “the true mysteries of every life,” but the ability to share them with others helps give him strength.
“Every year I leave humbled and grateful for our community and for the beauty of the spirits of our children,” he says. “I believe every life comes with a message. Many of those messages are ignored. Our children’s aren’t.”