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Mom Goes Blind So Her Kids Can See

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Lane DeGregory for St. Petersburg Times: After her husband leaves for work and her daughters board their school buses, Monique Zimmerman-Stein feels her way down the cluttered hall into the kitchen, trying not to trip over the cats. She struggles to rinse the dishes, to mop the sticky floor. She tries to picture what her girls must look like now that they're 10 and 13. She hasn't been able to see their faces in two years. Her days are long and dark and quiet. Except for the phone. It rings six, 12, 20 times a day. The callers are bill collectors for hospitals, surgery centers, doctors and specialists, all demanding money the family doesn't have.

Zimmerman-Stein and her husband, Gary Stein, have Blue Cross/Blue Shield insurance through Stein's job at the Hillsborough County Health Department. They pay $90 a week for coverage. But the insurance isn't nearly enough.

"I know I won't ever see again. I'm not even asking for that," Zimmerman-Stein said. "I just don't think we should have to deal with constantly being harassed."

• • •

Zimmerman-Stein is 48. She and her two youngest daughters have Stickler's syndrome, a rare genetic disorder that causes joints to dissolve and retinas to detach. Zimmerman-Stein lost her right eye at 16 and now sees only enough light through her left eye to tell night from day. She and her children are constantly in and out of doctors' offices.

Aliyah, 10, almost died at birth and needed a tracheotomy for six years. Dava, 13, has arthritis in her spine and lost the sight in her left eye.

Insurance has been invaluable, said Gary Stein, 52. But it covers only 80 percent of most bills. The family is left to foot the balance.

The coverage would be adequate if they had only minor medical concerns, but their conditions require expensive tests, treatments and medications. In the last decade, they have racked up a half-million dollars in bills not covered by insurance.

They took out a second mortgage on their house (they later lost it to foreclosure and now rent). They sold furniture and cashed in life insurance, got their creditors to forgive some debt. Zimmerman-Stein's brother gave them $50,000, all he could afford.

Next to the sofa, a canvas bag from Disney World bulges with unopened statements from Florida Pediatrics, Tampa Bay Emergency Physicians, the Mayo Clinic. On the envelopes, red letters scream, "Delinquency Notice" and "Past due."

They still owe at least $20,000, maybe 10 times that much, in medical bills. They don't really know. Stein stopped opening the envelopes months ago.

• • •

In his Sept. 9 address to Congress, President Barack Obama urged lawmakers to set a limit on the amount of money anyone would have to pay out of pocket for health care. Patients would have a lifetime maximum they were responsible for, the way many insurance companies have a limit on what they will cover.

"In the United States of America," Obama said, "no one should go broke because they get sick."

But for Zimmerman-Stein and her family, going broke isn't the worst of it.

• • •

Recently, Zimmerman-Stein made a decision.

She will no longer get treatment to preserve that last slice of light. The injections that might help cost $380 after insurance, and she needs one every six weeks. She could be spending that money on her daughters' care.

If forgoing treatment might help them see, she said, "That's a choice any mom would make."

No one should have to make such sacrifices, said her husband. He hopes the new health plan will include a public option and won't exclude people with pre-existing conditions -- like his wife and daughters.

At least, he said, the government needs to cap out-of-pocket medical expenses.

Stein brings home $1,500 every two weeks, half of which is supposed to cover the rent. But most goes to doctor visits for his daughters.

The girls' school clothes came from Goodwill this year. Zimmerman-Stein borrowed money to buy them backpacks.

Things are so tight, she and her husband fight over every expenditure: How can we keep paying for cat food? How dare someone let a lemon rot in the refrigerator!

For the first time, after 28 years of marriage, they need counseling.

But they can't afford the co-pay.

• • •

Every afternoon about 4, Zimmerman-Stein feels her way to the front door. She wishes she could meet her daughters at the bus stop, like other moms. But even with her red-tipped cane, she's afraid to walk there alone. What if she missed a curb or embarrassed them?

So she stands in silence on the porch, listening for their footfalls, anticipating their laughter. She asks her girls about school, friends and homework, and about what they want to help her make for dinner.

She doesn't ask about the mail anymore. She knows they bring it in and drop stacks of bills into the Disney bag so their dad doesn't have to see them. She knows they hear mom and dad fighting, see mom crying.

One day last week, Zimmerman-Stein's face was splotchy when her daughters got home.

Her phone hadn't stopped ringing all day.

Dava, who's in seventh grade, dropped her backpack and led her mom to a chair. She rubbed her mom's shoulders and promised, "It's going to be okay," but Zimmerman-Stein couldn't imagine how.


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7 comments so far | Post a comment now
Kristen September 28, 2009, 12:56 PM

THIS IS WRONG!!! This family is falling apart due to bills, that is SAD and shouldn’t happen.

Thanita September 28, 2009, 1:37 PM

OMG this is so heart breaking.

shey September 28, 2009, 6:23 PM

how aweful! omg

Anonymous September 29, 2009, 3:32 AM

This is sad but I’m curious if they had 1/2 million dollars of medical bills covered and thier insurance covers 80%, just how much time are they at the doctors? That seems like a lot to me.

veglib October 2, 2009, 9:17 AM

I have a different take on this. Why on earth did this mother, knowing she had a serious genetic defect that could be passed on, have kids in the first place?

Anonymous December 22, 2009, 10:18 PM

It says she didn’t know “until her youngest daughter almost died”.

My question is, how do they afford to rent that house?

My suggestion is, move to Canada.

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