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Article Last Updated: Sunday, December 15, 2002 - 11:42:44 AM MST

Miracles of life: Told she'd never have kids, disabled women is mom to two
By Jennifer Carnig - STAFF WRITER

Most parents look at their children as tiny miracles.

But in Veronica Santos' case, her two children ``really are miracles.'' The 28-year-old, diagnosed with spina bifida at birth, was told she could never bear children.

The condition, a severe birth defect where the spinal cord doesn't fuse together properly, often leaves sufferers unable to walk.

``All my life I wanted a perfect little boy and a perfect little girl,'' Santos says. ``But I never thought I would because of my disability. My doctors told me to let it go, that it was crazy to even think about it. But it happened.''

It wasn't easy. But as Santos says, ``When is life ever easy?''

A single mother, she raises 7-year-old Gina and 5-year-old Marco by herself. She supports them on about $1,000 a month in welfare and government disability payments. She can't afford her own place so she lives with her parents and shares a small room with her son and daughter.

Veronica Santos cautions her son, Marco, to be careful when crossing the street; daughter Gina holds on to her mom's wheelchair on their way to the playground.

The children have two different fathers, neither of whom are in contact with the family. ``I'm doing it on my own,'' Santos says heavily, keeping her voice down so Gina won't hear. ``Their fathers really don't show any interest in them.''

But the little girl who's a mirror image of her mother - thick brown hair, big brown eyes, full pouty lips - turns around and joins the conversation.

``I don't talk to him too much,'' Gina says matter-of-factly of her father. ``Sometimes, on my birthday, he calls. He doesn't talk to me much. ... But that's his problem.''

It's a little thing, just a passing comment, but it sums life up for the Santos family.

Things aren't easy - in fact, they can be downright painful at times - but the family rolls with the punches and wears smiles doing it. After all, the fact that they're there is ``a gift,'' Santos says.

``These children are miracles,'' she says. ``I wasn't supposed to have them. So everyday I try to live my life deserving of them. I make mistakes, sure, but I do my best.''

When Santos was born her hips were out of the sockets and her Achilles tendons were too short. Until she was 14 she spent more time in hospitals than she did at home with her parents and five sisters.

``They knew me by name at all of the hospitals,'' Santos says of the time she spent at Kaiser, Children's Hospital and Stanford Medical Center.

``When I checked in they'd just be like, `Oh, you're back again?' I knew the nurses better than I knew kids my own age.''

Santos has had more than two dozen surgeries - the most recent was two years ago - including a procedure that connected a tube in her head to her stomach, a process called ``shunting'' that removes fluid from the brain.

Doctors told her parents when she was born that she wouldn't walk. But when Santos was 4 her muscles were strong enough so she started taking halting steps. Similarly, Santos was told she'd never have children because she couldn't carry a pregnancy to term, but she did. Yet she had both of her children vaginally.

Even an epidural was out of the question because doctors feared they might accidentally paralyze her.

``It's tough - a lot of complications are possible,'' says Mary Johnson, spokesperson for the Spina Bifida Association of America in Washington, D.C. ``But a lot of women with spina bifida do end up having children. There are just more risks. It's more likely that they'll have children with spina bifida.''

Her father puts it a different way.

``Veronica's life is a miracle,'' says Tony Santos. ``She wasn't supposed to be able to do the things that she does. But she's always had that friendly, positive personality. I think that's what's helped her overcome so much difficulty.''

She makes it look easy.

Santos is greeted everywhere she goes with honks, waves and a choir of ``Hi Veronica!'' Unable to drive - she can't control parts of her lower body quick enough to work the gas and the brake pedals - she zips across Fremont in her black ``Quickie'' brand electric wheelchair.

On sunny afternoons, Marco and Gina join her, Gina decked out in pink roller blades and a matching pink helmet, and Marco on his silver bike.

``It's the convertible Mustang I never got,'' she says laughing, wind in her curly thick hair as she rides into the parking lot of her neighborhood Starbucks. It's her hangout, the place where she grabs an hour of peace and quiet weekday mornings between ushering the kids to school and picking them up.

It's here that she's part of the ``Original Crip Chicks,'' a ``gang'' of her and a friend who is also disabled. ``Crip'' is short for crippled.

``If you can't laugh, then what's the point?,'' Santos asks.

Her quick-witted brand of humor peppers everything that she does. Even her voice mail message tells callers to leave a message if they want, but if they don't ``that's your problem.''

``She's always been tough on the outside but sweet on the inside,'' says Union City resident April Angle, Santos' best and oldest friend. The pair met during their freshman year of high school and have gone through everything together - from cruising for guys in Angle's truck in high school to Santos' pregnancies.

``I really admire her,'' Angle says. ``She's gone through a lot. But she's done it all with a sense of humor and she has two beautiful kids to show for it.''

The kids are Santos' life, Angle says. ``She'll do anything for them.''

And she does. Santos doesn't work because she needs to take care of Marco, who's in a half-day kindergarten program.

``And it's never easy with you around, is it little man?,'' she teases, tickle torturing Marco, the ``handful'' of the family. ``Don't let his cuteness fool you. He'll make you nuts.''

Conditions can be trying for the family. The four-bedroom house is shared not only by Santos, her parents and two children but with two of her younger sisters. Fights and tension are common in the cramped space.

``We have some real difficult moments,'' Tony Santos admits. ``You don't expect to break your back raising your kids just to raise your grandkids, too. But that's what family is for - to help. We recognize, even in the rough spots, that we're blessed to have Veronica and these kids.''

``It's hard,'' Veronica Santos confirms. ``But being a parent's not easy for anybody. Whenever things get a bit too overwhelming, I just remember these guys are my miracles. I wasn't supposed to have them but I did. It's Christmas every day of the year for me because of them.''

- For more information on spina bifida, visit the Spina Bifida Association of America at www.sbaa.org or call 1-800-621-3141.

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