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 just gets a lot more complicated.
For the average parent of a child with a disability, it's hard enough keeping up with your child's needs, doctor's appointments, and dodging judgement from ignorant strangers. Now, imagine doing that while being under the watchful eye of people all over the world.
That's the life actor Colin Farrell's has been living over the last few years.
Farrell's oldest child, 14-year-old James Padraig, was diagnosed with an extremely rare genetic condition when he was just two years old.
James suffers from a severe developmental disability caused by Angelman syndrome. Often misdiagnosed as autism or cerebral palsy, the rare and complex condition primarily affects the body’s nervous system, and is characterized by movement and balance issues, severe speech impairment, seizures, sleep problems.
“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,” Farrell said while attending the annual summit and gala for Angelman syndrome research in Chicago.
From 2003 onward, Farrell had to learn how to be a doting father to an ill son.
For someone who wasn't ready for fatherhood, Farrell really struggled with his new off-screen role. In fact, his lack of preparedness coupled with the pressure of working in Hollywood proved too much, and he ultimately reached a breaking point.
"When I had James, I made a decision not to change," Farrell, who once said alcohol was a part of his "brand" told Details magazine. He continued, "I literally said, 'I'm not changing! I'm gonna be his friend!' Like a f--king 28-year-old drug-addicted drunk friend is exactly what my 6-week-old son needs."
The Miami Vice was eventually slapped in the face with a massive reality check when he realized that he would not get the chance to watch his son grow up if he doesn't clean up his act.
He made the decision to check into rehab in 2006, when James was just three years old.
Over the years, the actor became more comfortable with speaking out about how much fatherhood has changed him, and the "pride and joy" he has for his special needs son.
In an interview he gave a few years after completing rehab, Farrell admits that he still doesn't know what he's doing, but he's no longer focusing on the negatives.
"Not knowing what the f--k I'm doing as a dad is huge," he told Detail. " I don't know what I'm doing, and that's a very liberating thing. You just go, 'Oh look, there's s--t on the floor.' There's actually s--t on the floor — I have a picture of it on my phone. So what do you do? You clean it up, put a diaper on his a--, and that's that. It's just about being present for these guys."
There's something incredible about watching your child do things you never thought they would be able to do, and Farrell gets to experience this often as James continues to make progress.
“James is an absolute stud,” he told People magazine. “Every day, just breaking down boundaries. He’s an amazing boy.”
"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 developmental disabilities or genetic disorders, Farrell has become an advocate for Angelman syndrome, appearing at multiple fundraisers and conferences to speak about his experiences with raising a child with the condition.
He likes to talk with other parents so that they know that they are not alone in their ordeal. He recently took some time to share some advice and words of support to parents who are raising children with disabilities.
The Saving Mr. Banks star regularly attends the annual gala for Angelman syndrome research, and he had some wise words to share at last years event.
His advice is pretty simple, and it's something that many parents need to hear.
"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."
Farrell is putting an emphasis on reaching out, because it took him 12 years to finally open up about James' condition, and that's something he wished he could've done sooner.
"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. This is why Colin speaks so candidly about what he, his son, and his son’s mother have gone through.
"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 Farrell. "When you're the parent of a child with special needs, it's important to feel that you're not alone."
Despite all of the trials and tribulations, at the end of the day Farrell has to remain strong for his boy. It definitely does put extra pressure on him, but he has never regretted a moment of it.
"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 Farrell.
"I would also say that my heart is with you all, along with my respect for you, for your children’s struggles and for the love that you have for your children and that I wish you all peace and support in the face of any adversities.”
Regardless of the challenges, when you look in your child’s eyes, and you see just how they see you, it is all worth it, and that's something the actor has learned thanks to James and his youngest son, Henry.
“I have no understanding of the true mysteries of every life, but I believe every life comes with a message,” Farrell added. “Many of those messages are ignored. Our children’s aren’t.”
It seems like fatherhood had helped Farrell reform is "bad boy" image, and helped him realize what's truly important in life.
We can't wait to hear more updates about James!