Bureaucratic Madness Tests A Loving Mother
Three kids. Married to a lawyer. A fine old house in a lovely South Hill neighborhood.
If that isn’t a Betty Crocker recipe for instant Happily Ever After, what is?
Carolyn Maloney thought so until fate and circumstance conspired to run her down like a transient on a train track.
Cancer struck her family twice. Now the Spokane woman is trying to pry enough money out of state bean counters so she can keep her profoundly disabled daughter home.
Carolyn, 48, gets through each day thanks to prayer and Prozac. “I’m losing it,” she says. “I haven’t even had time to grieve. Every once in a while, I just crash.”
If you haven’t counted your blessings lately, read on. This woman who once studied to become a nun has weathered travails worthy of Job.
Her troubles started with breast cancer in 1990. Carolyn fought back with treatment and surgery to remove a breast.
Life was beginning to smooth out until Carolyn’s husband was diagnosed with lung cancer. A nonsmoker for nearly a decade, Tom Maloney, 51, died a slow, agonizing death one year ago last week.
The lawyer died without life insurance.
“We didn’t think we’d need it,” says Carolyn, pursing her lips. “That was a bad, bad decision.”
Being a newly widowed single mom would send anyone’s anxiety level off the stress charts, but Carolyn’s situation is compounded by an additional heartache.
Her two older children are bright and well-adjusted. Mary, however, suffers from a devastating brain disorder known as Rett’s syndrome.
The 12-year-old is essentially a 90-pound toddler who needs constant energy-draining care.
“Mary’s a baby and will be a baby for the rest of her life,” Carolyn says. “There is a constant grief in Rett’s syndrome. You see normal girls her age, and you can’t help but ask yourself, ‘Where are the birthday parties? Where are all the normal things?’
“Then you realize they never will be.”
With Tom by her side, the Maloneys performed a heroic parental balancing act: caring for Mary, but not at the expense of their two older kids, Zeke and Anna.
It was a team effort difficult to imagine. There were years when Mary wouldn’t tolerate even the slightest touch. She would scream for hours on end.
Gradually, their devotion began to pay dividends. Mary learned to walk and to accept hugs and kisses.
Rett’s syndrome is an insidious affliction that strikes only girls, about one out of 15,000 births. A Rett baby appears to develop normally until perhaps 18 months. Then brain function stops growing.
Mary could have been institutionalized in a long-term care facility like Medical Lake’s Interlake School. The Maloneys never had that option. Considered too costly, the state was phasing Interlake out by the time Mary would have needed it.
Following Tom’s death, a devastated Carolyn placed Mary in a foster home. Mary did not respond well. She began shutting down, says Carolyn, who saw the foster care as “glorified baby-sitting” and brought her back home.
And here’s the aggravating rub.
Although the state pays about $2,000 a month to provide foster care for Mary, the figure drops in half to pay visiting nurses if the girl stays in her own home.
The reason, explains a child welfare worker, is that two different agencies are involved - Division of Development Disabilities and the Division of Children and Family Services. Each agency has its own rules and red tape for spending.
But an exception to policy can and should be made. If Carolyn can keep Mary home and out of the system, why not give her the equivalent of what would be spent on foster care?
This is one woman who deserves a break, even a small one.
“I never used to have to ask for anything until Tom got sick,” Carolyn says. “It’s hard to keep asking, but I’m just trying to make a go of my family.”
, DataTimes