Emily Bhandari, a Chicago psychotherapist. But relationships can survive and thrive when there’s a child with special needs involved.
Making it work Brittany and Michael Reyes have been married for nine years, with two children who have special needs. Their 7-year-old, Zander, has a sensory processing disorder. Feeding is an issue because of textures and smells, and when he comes home from school, he’s totally stir crazy. But it’s their 5-year-old daughter, Zoe, who has the major health problems. She was born with heterotaxy syndrome, an incredibly rare birth defect, where most of the organs are in irregular places inside the body. Zoe has heart defects, and her heart was in the center of her chest when she was born. She had five spleens, but none of them worked, and she had a blockage in her small intestines. “I went through a huge depression,” says the University Village mother. “I didn’t buy anything pink, I didn’t want to get her room ready. I was always afraid of death,” she says of her pregnancy. She was advised to terminate four times. When Zoe was 5 days old, she had her first surgery, and since then, Reyes has had to watch her daughter flatline. For the first 2½ years of her life, Zoe was in and out of the hospital almost daily. “Any time she’s in the hospital, it throws our whole family off,” Reyes says. “But since we’ve been doing this for five and a half years, we have a routine.” They have to have a routine, actually, or else it’ll disrupt her son’s well-being, which depends on that routine. Reyes says she goes to the hospital as often as she can during the day, despite her full-time job as a matrimonial law paralegal, while her husband takes over at night so Reyes can race home to spend time with her son, doing dinner and baths. What she learned through her job, however, is not to let her marriage suffer as a result of
everything else that’s going on. “Having a child with a really sick illness is very, very hard,” she says. Michael is “my saving grace.” Sometimes, they snap at each other; it’s a natural instinct to take out your problems on the ones you love most, Reyes says. Still, she depends on her husband, describing him as “her rock.” “He calms me down for every worry that’s ever crossed my mind on both of our kids,” Reyes says. “It either makes you or breaks you, and I’m fortunate that it has kept us together.”
Common pitfalls Reyes and her husband have avoided many of the pitfalls common to special needs families. “Couples may fall in the trap of resentment, one-upping each other with frustrations of the day instead of showing gratitude, appreciation or really
Shana Frederick, a stayat-home mother in Wheaton, knows that feeling well. She and her husband have a 6-year-old and a 2-year-old, and her eldest, Ben, has special needs. “It changes everything,” she says. Ben has Asperger’s syndrome, PANDAS, brain inflammation and Lyme Disease. Last year, his therapy sessions alone took 35 hours a week. “It’s like a full-time job,” Frederick says. The full-time job has no breaks. She and her husband just celebrated their 10-year wedding anniversary two years late, and they brought along their parents ... and their kids. It’s all about adjusting their expectations and staying together as a team, Frederick says. Instead of going out to romantic dinners, they do a lot of takeout. They also are very clear about their own needs. “You can’t assume anything; nobody is a mind reader,” Frederick says. “If I’ve had listening to each other,” says enough, and he’s home, I have Carrie Krawiec, a marriage and to literally say, ‘I need a break, family therapist in Troy, Mich. can you give the kids a bath “Couples may also be inclined to tonight?’ When we assume, we talk less to each build up resentother because ment, and it’s too of the physical late.” demands of the Frederick also needs of the spelikes to remind cial needs child, herself that while like requiring she and her more one-on-one husband have supervision and to support each limited availother through the ability of skilled difficult times, babysitters.” there are also Or sometimes, many positive the parents might aspects of having a not talk because child with special — Brittany they feel sad or needs—and these guilty about their are the instances Reyes unmet dreams that they can celor expectations, ebrate together. Krawiec says. “We know that “If couples cannot turn we get to experience awesome toward each other and conthings together, and when you nect and empathize with these experience an amazing thing little talked about feelings, then happen with your child, there’s stress and disconnection will nothing like that—and you get grow,” she says. to do that together,” she says.
“It either makes you or breaks you, and I’m fortunate that it has kept us together.”
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