Twelve years ago, actress Kassie DePaiva, best known as “Blair” on the ABC soap opera One Live to Live, never would have guessed that a storyline from her own show would later help her take care of her own real-life medical drama.
It’s 1997 and Kassie’s son James Quentin, or J.Q. for short, is born with profound hearing loss that would be diagnosed when he is about a year old. An otherwise healthy boy, Kassie began to notice something wasn’t quite right when she would see her friend’s twins, months younger than J.Q., watching conversations and babbling, but J.Q. wasn’t.
“I had no indication of his hearing loss when he was born -- at the time only 11 states mandated newborn screening, but since then, it’s up to about 39 states,” says DePaiva. “When J.Q. wasn’t doing what the twins were doing, we just dreaded the possibility this could be the case.”
After an audiologist test confirmed her worst suspicions, Kassie and her husband, OLTL actor James DePaiva, were crushed.
“They put high-powered hearing aids and sound on him and he was not responding. I could hear it through the headphones and my heart was breaking,” says DePaiva.
Like many parents going through a crisis, Kassie says she had anxiety and fear, but just didn’t want to deal with it at the time.
“In hindsight I can talk about it, but going through it I didn’t want to deal with it because you just want your child’s ears checked and hope the doctor is going to say there’s wax buildup and it’ll be fine,” says DePaiva. “But once you know there is a possibility, you have to allow yourself to think the worst and then when it comes to fruition, you’re just disappointed and you have to mourn that loss and feel those feelings and then move forward and do what’s best for him.”
Enter the storyline on One Live to Life. Two years before her son’s diagnosis, Kassie’s husband Jimmy’s character Max, and Luna, had twins and one was deaf. The DePaivas became friendly with a teacher for the deaf on the set.
“When we realized that J.Q. might have issues, we contacted her at the Lexington School of the Deaf and she led us to the League for the Hard of Hearing where we received a wealth of information.”
The League, according to their website (www.lhh.org) is the premier hearing rehabilitation and human services agency in the world for infants, children and adults who are hard of hearing, deaf and deaf-blind, and their families.
J.Q. is now 10 and has had two cochlear implants. According to the National Institute on Deafness and Other Communication Disorders, a cochlear implant is a small, complex electronic device that can help to provide a sense of sound to a person who is profoundly deaf or severely hard-of-hearing. The implant consists of an external portion that sits behind the ear and a second portion that is surgically placed under the skin.
Even with the right resources and the implants, DePaiva knows that coping with J.Q.’s hearing loss is an ongoing adjustment.
“It’s not exactly what you want to hear and there’s definitely obstacles when you find out your child has any type of disability, but you take what you’re handed and make the most of it,” she says. “It was difficult, and it continues to be difficult, but I think when we meet challenges in life, it makes us better people, depending on our choice in how we deal with it.
“For example, (the night before this interview) J.Q. was in a cranky mood and got a little angry at me, asking, ‘why did you make me have the second cochlear implant? I don’t like it as much as my first one.’ This gave me an opportunity to be a better parent, to talk to him about that in a way that was loving and understanding,” she says.
“I don’t pray every night that J.Q.’s hearing is going to be restored; I just pray that we all learn to be tolerant and helpful and understanding. I hope that I can do the best that I can with my son and that he grows up to be a loving, caring individual that can also have compassion for someone else with hearing loss.”
While many parents of special needs children suffer from strained relationships, the DePaivas have not had those kinds of challenges.
“Our marriage was never challenged because of J.Q.’s hearing loss, it’s challenged over the regular things that people get upset about like ‘could you empty the dishwasher, or can you fold the clothes,’ but if anything, (J.Q.’s hearing loss) brought our marriage closer because we both had the same goal -- to make sure J.Q. had the best opportunities available to him.”
To help support their son, the couple met with deaf adults and attended group therapy sessions for parents of children who needed speech therapy.
“We had an opportunity to talk about what works for us, what works for them, what are your obstacles, what are you overcoming.” Later, the couple discussed cochlear implants with various recipients of the technology while making their decision.
Today, she gladly shares advice for those who are just receiving this news for the first time.
“If a young couple finds out that they have a child with a hearing loss, look at each other and realize that God chose them and that is their responsibility, and this will bring them even closer.”
In addition to her acting role, DePaiva is also hard at work increasing awareness of the League for the Hard of Hearing, and making Happy Hats – hundreds of Happy Hats. These fun creations are handmade by the soap opera veteran, with 100 percent of the proceeds benefiting the League for the Hard of Hearing.
She also finds the time to record her music, including her latest album, I Want to Love You.
“Music warms my heart and doing things for other people warms my heart,” she says. “Acting is a lot of fun for me, but that is not all that I am. And I really like to do creative things and the whole reason behind making the happy hats was a creative outlet for me, but at the same time, I turned it into something that could help the League for the Hard of Hearing, which was a really positive place in our lives where we took J.Q. So, if we can help them out and I can crochet hats and give a little back in return, its fun.”
For more information on Kassie and her hats, visit http://www.kassiedepaiva.com/.