Roy had a hemorrhagic stroke on the second day of a new job, before his insurance benefits had started. On the day of the surgery to remove the clot, his kidneys failed. His deficits are severe; he is in a wheelchair, on dialysis and can't talk. He is in and out of the hospital often - 12 times last year, and four times so far this year. He goes for dialysis three times a week.
"I have had to learn to maneuver bureaucracies for services Roy doesn't qualify for because of his age," says DeFannie. "I managed to get him into the Medicaid waiver program, so now I don't have to worry about medications, doctor visits and two visits a week from a home health aide."
And she's had to learn to maneuver through a financial minefield because of lost income. She tries to stretch $1,800 in Social Security Disability payments to cover the needs of four people. "Our home has been in foreclosure four times," she says. "Before we were on the waiver program, I often had to choose between paying for Roy's medications and paying the mortgage and utilities."She has found ways to have her home modified for Roy's wheelchair and to have a concrete pathway built from a side door to the street. Before the pathway was made, she had to push the wheelchair over grass to the street to be picked up by the local handi-rides.
She has found places where she can save money and highly recommends the Caregivers Marketplace, where family caregivers can get deep discounts on incontinence supplies and other items necessary for taking care of someone who is chronically ill or disabled.
Although children are flexible and resilient, the stress of the situation takes its toll in small ways, the effects of which accumulate. There are no family vacations, and since life is frequently interrupted by emergencies and their aftermath, "quality time" gets compromised.
"Deonna, my middle daughter, 13, is very quiet and introverted since her dad's stroke," says DeFannie. "I had to get her into therapy so she can express her feelings. I know it's hard for adults, so I can't imagine what's going on with a child. I know she's really dependent on me because she's already lost one parent.
"I know it hurts her to go to the hospital and see her father so sick. She remembers when it was different. At the hospital she pulls back from her dad, so I asked her how she feels. She said she wishes things could be like they were, and she asked why did it happen to her dad."
In keeping body and soul together, DeFannie has found support from friends and her church. "My church has kept my family in prayer as well as helping with some bills. One particular friend paid my house note for months. They still buy us toilet paper and paper towels."
DeFannie is using her experience as the basis for a speaking career. After speaking at a Cover the Uninsured Week rally, she was approached by an aide to U.S. Rep. John Conyers Jr. (D-Mich)., who helped her find a way to pay the arrears on her house payment. "My house payment is still $800 on $1800 income, so I'm still faced with shut-off notices and everything."
DeFannie finds strength in her faith. "Personally I don't understand why it happened, but I've stopped asking. I think some people just don't have it within themselves to give to people. It has to be something that's inside you. I would do this again, but some people can't do it. It takes a special person to sacrifice themselves. It's unconditional love. I know that we get through this because we've become so close as a family."