Suburban mothers of disabled children face relentless challenges

Diane Carpenter will host her family for Mother's Day at her Winfield home again this year. It's work, but it's so much easier than taking her 25-year-old daughter out.

“I have to watch her every second,” Carpenter said, “so it's never relaxing for me to take her anywhere.”

Debrina Moore will be home too, perched on one small corner of her 5-year-old son Christian's hospital bed in their Glendale Heights home. Daughter Cabri, 11, will climb on the other side. Together, the little family will watch a church service on TV.

“I wish we could go out to dinner,” Moore said.

She's sad for a moment, then shakes it off.

For both of these extraordinary women, even Mother's Day is no vacation from the relentless challenge of caring for severely disabled children.

Carpenter still doesn't get a full night's sleep many nights. Several times a week, Moore barely gets any.

“It tears you down mentally, physically, spiritually and financially,” Moore said.

And yet they hang in there, hour by hour, year after year, a testament to their deep and abiding mother's love.

A home for Christian

Christian Moore doesn't walk or talk, but his huge smile lights up the room.

“That's what pushes me,” his mother said. “When I can see the joy on his face, even if I've had no sleep, that's what gives me the energy to keep going.”

Debrina, 33, is the mother of two “miracle babies.” Cabri was born at 22 weeks, weighing just 1 pound, 2 ounces. She has learning disabilities, but no other complications from her rough start.

But Christian, born at 24 weeks, wasn't so fortunate. He has cerebral palsy, seizures, badly damaged lungs and central hypoventilation syndrome — a potentially fatal disorder that causes him to stop breathing 20 times a day. He has a feeding tube in his stomach, a tracheotomy tube in his throat and, until last September, needed a ventilator to breathe. He uses oxygen and requires 24-hour care.

“I don't want to put him in a nursing home,” Moore said. “When you are home and you are loved, you heal better.”

A family whose mother Moore cared for as a hospice nurse offered her the Glendale Heights house. The rent is a struggle, but the home's lower level is the ideal space for Christian's array of medical equipment, supplies and at-home therapy sessions.

Moore, a single parent, works three jobs to cover the living expenses.

A nurse comes in during the day while Moore is at work, and another cares for Christian overnight three nights a week. The rest of the time, Moore is on her own. She'll work all day, and then be up at night caring for her son. She reads to him, massages him and makes sure he doesn't stop breathing. She doesn't leave his side for longer than it takes to put a frozen pizza in the oven for dinner.

She doesn't sleep.

“I throw cold water on my face so I don't give him the wrong kind of medicine or the wrong dosage,” she said.

“I just pray and ask God for strength because I have to provide for them,” Moore said.

Moore's only family is the 89-year-old grandmother who raised her, who is now ill. Debrina has no social life.

But people have been kind. Moore is using a neighbor's car to drive to work right now because hers broke down. Another neighbor picks up Cabri from school. Her employer, Family Home Health Services in Addison, has been “phenomenal,” Moore said. She has to miss work for Christian's doctor's appointments, which take most of the day. “They could have fired me a long time ago.”

Make-A-Wish Foundation gave Christian a therapy hot tub, which helps ease his muscle contractions. A built-in sound system and lights bring out his million-dollar smile.

And Almost Home Kids, a Naperville agency that provides respite care for disabled children, “took me in like family,” Moore said.

Three times a year, Christian spends three or four days at Almost Home Kids so Moore can spend quality time with her daughter, taking her swimming or to a summer carnival.

“Cabri gets really sad about her brother,” Moore said. “We can't go anywhere or do anything. She asks why do I have to work so much.”

Money is a constant worry. She is $6,000 behind on her electric bill, because Christian's medical equipment consumes so much electricity. Her gas bills are through the roof, too, because she has to keep the house warm.

Moore — a licensed practical nurse — was taking classes toward her R.N. degree, but had to stop. Her long-range goal is to set up her own respite-care home to help other families.

“Sometimes I get mad at God and say, ‘Why me? Why do I have to struggle at such a young age?' But then I just take a deep breath, and say ‘you've got to get moving.'”

The puzzle of Beth

Diane Carpenter has been taking care of a 2-year-old for 24 years.

Her daughter Beth — “beautiful, sweet, lovable” Beth — is severely autistic.

Beth didn't sleep through the night until she was 11, wasn't toilet trained until last year and doesn't talk.

Beth needs constant one-on-one attention to keep her safe and out of trouble. She has no concept of danger and an array of compulsive behaviors. She rips up paper, puts it in her mouth and then spits it out all over the floor. She takes the clothes out of the closets and throws them on the ground. She runs around turning the lights on and off. She flushes the toilet repeatedly.

For years, Carpenter slept on the floor next to Beth's bed to make sure she stayed in her room. To this day, Carpenter rarely gets a full eight hours because she can't go to bed until after Beth's asleep, and she gets up when Beth does — usually very early.

People tell her she's a great mom, a saint.

Carpenter, who has twinkling eyes and an infectious laugh, is matter-of-fact about it.

“It's a challenge and just coping,” Carpenter said. “Just getting through the day.”

She used to be a computer programmer, and she always planned to go back to work when her children were old enough. Carpenter and her husband Dave also have a son, Alex, who is 23. Beth will be 26 this month.

Diane's career ended when Beth was diagnosed with autism.

“Now, I channel all my efforts into keeping Beth sane and alive,” Carpenter said.

Beth, who has curly hair and delicate features, attends a day program for severely disabled adults at RRAF in Lombard.

“I would be stark raving mad if I didn't have the break that provides,” Carpenter said.

When Beth gets home shortly before 4 p.m., she goes upstairs to rest for a few minutes, then to the kitchen for a snack, then watches a little TV — the same routine every day. Beth likes “Sesame Street,” “Glee” and “American Idol.”

Diane is always a step behind her cleaning up the mess and a step ahead of her trying to keep Beth constructively occupied.

Buying Beth an iPad was her most recent brainstorm. Carpenter got the idea after reading a story about 2-year-olds using them and figured, why not Beth? It was a risky proposition to buy a $500 tablet for Beth, but Carpenter also found a sturdy, heavy case. Since November, Beth has dropped her iPad many times, always with a loud thud. But it's still working.

Beth loves it. She does simple puzzles and plays games. Some are educational, some are just for fun.

Carpenter is working on having Beth use a communication app on the iPad. Beth can touch a picture showing an object or activity, and a voice says the corresponding word of phrase.

“Every night, I make her say ‘I love you,' ‘Night, night' (and) ‘I want to go to sleep,'” Carpenter said. “The goal is to have her communicate with this.”

Carpenter wrote a story about Beth's experiences with the iPad. It appears on the Autism Society website.

Carpenter's mother and sister occasionally come stay with Beth so she and her husband can have a short break. But she worries about the future. She has an application for Misericordia in her desk, but hasn't filled it out yet.

“I'm not going to live forever,” Carpenter said. “(But) the thought of having someone else take care of her really stresses me out. You know she's never going to get the same care she gets at home.

“When the trade-off is my sanity or her happiness, her happiness always wins.”

Like many children with autism, her daughter developed normally until she was about 18 months old. Then the little girl who could count to 10 in Spanish started losing her words, until eventually she was completely silent. She was diagnosed with autism when she 2½ years old.

“The only thing she can still say is ‘Hi, Mom,'” Carpenter said. “Most people don't know that's what she's saying, but I know.

“Those are the only words she has left.”