When James was only two years old, he was diagnosed with Angelman syndrome, which is a rare and complex genetic condition.
Parenting is the hardest job in the world. Children will test you in ways that you never thought possible, and no matter how old your kids get, it never gets any easier, or any less confusing. When your child is born with special needs, it doesn't make it any harder, it just gets a lot more complicated, and the number of doctors appointments shoots through the roof. Having two children diagnosed on the autism spectrum, I can completely understand what it must have been like for Colin Farrell, raising a child with an extremely rare genetic disorder: complicated.
Farrell has a now 16-year-old son named James. When James was only two years old, he was diagnosed with Angelman syndrome, which is a rare and complex genetic condition that primarily affects the body's nervous system. It has several characteristic symptoms that include: problems with movement and balance, severe developmental delays, intellectual disability, and very severe speech impairment. The child will also show some physical characteristics like a small head and pretty specific facial features.
When you put that all together, as a parent, your job does get a lot more complicated. On top of just learning how to be a parent, you have to learn how to be a very specific parent. And, if you are someone who lacked patience or empathy in your life before kids, you are about to get slapped in the face with both of those. That is what Colin Farrell has been dealing with as a parent for the last 14 years, and it can't have been easy.
You never truly know how you are going to react when you get news like this about your children, and it is up to you to decide what kind of person you are going to be. Colin took the approach of sheer joy and amazement.
"James is an absolute stud," he told People magazine. "Every day, just breaking down boundaries. He's an amazing boy."
That is what it really breaks down to, watching your child do things you never thought they would be able to do. Each step they take in the right direction lifts what feels like a two-ton weight off of your shoulders. "Everything he's achieved in his life has come through the presence and the kind of will that is hard work. He's a lot to be inspired by," Colin said . "Things like walking and talking and eating and feeding himself, all those things that so many of us naturally take for granted because they come so easily, to James, they come somewhat harder ... I remember the days when he couldn't watch ten minutes of a film because he couldn't sit still, but now he can."
Like a lot of parents who have children with any number of a variety of developmental or genetic conditions, Colin has become an advocate for Angelman syndrome, appearing at multiple fundraisers and conferences to speak about his experiences raising a child with the condition. He likes to talk with other parents so that they know that they are not alone in this battle because believe it, a battle is exactly what it is.
"The struggles of a child with special needs can be so brutal that they can tear at the very fabric of your heart, but the love shared and the pure strength and heroism observed is the needle and thread that mends all tears," he told Today reporter Christina Poletto.
As for parents, his advice is pretty simple, and it can be the life-saver that you as a special needs parent require, "Reach out," he said . "Find support. 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."
Colin regularly attends the annual gala for Angelman syndrome research. Colin first spoke publicly about his son's condition in 2012.
"I decided, after consulting with James' mother, model Kim Bordenave, that I wanted to talk publicly about the pride and joy I had in our son," he said . "He has enriched my life, but I don't want to minimize the trials that so many families go through: the fear, consternation, frustration, and pain."
There is no cure for Angelman syndrome, but that doesn't mean that the lives of these children and their families can't be wonderful experiences. Just because a child is born with a developmental or genetic disorder, doesn't mean that they aren't loving their life, they just happen to see it differently than we do. What is normal for us, might even seem strange to them. That is why Colin speaks so candidly about what he, his son, and his son's mother have gone through for all these years. It is a battle together, one that can never technically be won, but also one that should never be lost.
"We share in the smallest victories, the first words at age six or seven, being able to feed oneself at nine and getting the seizures under control," said Colin . "When you're the parent of a child with special needs, it's important to feel that you're not alone."
When your child relies on you as a parent, much the same way James would rely on Colin, and his mother, you need to remember that "they need you." They need you to be strong, they need you to be open, they need you to be whatever it is that they need whenever they happen to need it. It can wear you down as a parent and a person, but you never stop loving your child with everything that you are.
"I would humbly say to parents of a child with a recent diagnosis of any disorder that while they may well be experiencing the death of one dream, that dream of having a healthy child, there are a thousand dreams and milestones that are yet to reveal themselves," said Colin .
When you look in your child's eyes, and you see just how they see you, it is all worth it, regardless of the challenges that lay around the next corner.