A mother’s daily struggle

Alex Coolman

In a small classroom in Costa Mesa, bubbles are floating through the air.

Cheryl Cates, a speech therapist, is blowing streams of the glassy

spheres to attract the attention of a beautiful 18-month-old girl named

Tiara Goff.

Tiara, a child with immense gray-green eyes and a head of Shirley Temple

curls, watches the bubbles drift by her, smiling at the rainbows

shimmering in them.

But Tiara doesn’t do what most kids would do in this situation. She

doesn’t try to pop the bubbles bobbing just inches from her face.

Tiara simply stares at them, transfixed.

For Tiara’s mother, 30-year-old Costa Mesa resident Tiffani Goff, who

sits watching her daughter, it’s a difficult moment.

“She used to clap before her seizures,” Tiffani explains. “And now she

can’t clap. She seems to be slowly getting her skills back.”

Tiara suffers from tuberous sclerosis, a disease that has turned her

childhood development into a frustrating, frightening game in which gains

and losses of simple skills can never be taken for granted.

The disease, which affects about one million people worldwide, causes

growths called tubers to form throughout the body. They form in the

internal organs and in the brain, causing seizures and other problems

with the body’s ordinary functions. At about 2 years old, the growths

tend to erupt on the skin of patients as well.

There is no cure for tuberous sclerosis, and treatments for the various

conditions it causes are imperfect at best.

For Tiffani, Tiara’s disease has meant powerful changes in her way of

thinking about her life.

More than most mothers, whose watchfulness, love and care will be

celebrated Sunday, she has to face the radical uncertainty and sense of

powerlessness that are also part of being a parent.

o7 Will my child live?

Will my child have a normal life?

How can I help my child become the best she can be?f7

These are questions that most parents ask themselves at some point. For

Tiffani, they are questions that have to be confronted with each new day.

“For a couple months, I’ll forget she’s sick,” Tiffani said. “The next

day, she’s back in the hospital.”

However, when speaking with Tiffani, her strength is immediately

apparent. And upon learning more about her life, it becomes evident that

she has something powerful to draw from in her struggles with Tiara’s

condition.

Though her situation is extraordinary, the strength of her family ties is

extraordinary as well. Tiffani’s relationship with her husband, her first

daughter Tabitha, her sister Heather and -- in particular -- her mother

Jeanne, have always been close.

Since Tiara was born, those relationships have drawn even closer.

“There’s only two ways you can go [in a situation like this],” Tiffani’s

husband Louis explained one evening. “You can come together or you can

fall apart. There really isn’t any middle ground.”

Tiffani has discovered that when your child has a disease that isn’t very

well known, you end up spending a lot of time talking with doctors.

And the scary thing, she said, is that many times she knows more about

tuberous sclerosis than they do.

She can discuss anti-seizure medications like Topamax and Vigabatrin with

casual ease, and has in some cases ended up telling the doctors what to

prescribe for Tiara.

The pressure for her to be strong, composed and competent, even as she

copes with her daughter’s seizures and sudden trips to the emergency

room, is tremendous.

“If I cry,” she said, “then everyone falls apart. It’s like, ‘now it’s

bad.’ ”

But if her family depends on her to be strong, she is also able to rely

on her family to help with the challenges of daily living. Jeanne lives

just a mile or two away, and Heather is nearby as well.

“I just have to make a couple calls,” she said. “They all come out in

forces.”

On a recent afternoon, Jeanne watched Tiara while Tiffani went to an

appointment. As the young girl walked curiously around the dining room,

Jeanne talked about what her granddaughter’s illness has meant for the

family.

“You wonder how much you can be tested,” she said, because the day-to-day

uncertainty can be so draining.

Just the way Tiara had walked into the house on this particular day --

slightly unsteadily, but under her own power -- was a cause for

bittersweet emotion, she said.

Like her ability to clap, Tiffani’s ability to maintain balance and walk

around has developed and then eroded with the comings and goings of her

seizures.

Jeanne has followed her condition, the changes for better and for worse,

every step of the way.

“We see them almost every day,” she said. “We’re kind of an obnoxious

family. We’re all in love with each other.”

What the future holds is uncertain. The little girl with the immense eyes

is a mystery, a subject that can’t be predicted.

For Tiffani, and for the entire family, the reality is that they can’t

control the outcome. They can only work to support each other, to keep

their love and faith strong enough to meet the challenge.

“We have to think that it’s God’s will,” she said. “We’re grateful that

we were given the chance to take care of her.”

MORE MOM STUFF:

* Steve Smith says thanks to moms everywhere. See WHAT’S UP? on Page A3

* Karen Wight reflects on the greatest gifts of all. See NO PLACE LIKE

HOME on Page A9

* Greer Wylder bails out last-minute shoppers. See BEST BUYS on Page A4

* Cindy Trane Christeson looks at a mother’s greatest creation. See MORAL

OF THE STORY on Page A2