MARY'S FAMILY INAUGURAL ADVENTURE IN WILLIAMSBURG

As Reported by the Fauquier TIMES-DEMOCRAT of Warrenton, VA, January 17, 2006

Special-needs kids endure flu, seizures, handicap inaccessibility

By Rebekah Stone, Times-Democrat

01/17/2006

Parents Angela Arellano and Bulmaro Gutierrez were able to bring their children (from left) Jose and Isaiah to the inaugural parade after their daughter Emily (in chair) was released from the hospital.

What does it take to organize a weekend trip to Williamsburg? Now, multiply those arrangements by 65, including lots of kids -- almost 30 with special needs.

When Mary's Family was invited to participate in the governor's inaugural parade in Williamsburg, it was an honor for founding director Martha Toomey.

She had about 30 seconds to sit around feeling honored. Then the work started.

Visions of her organization marching to band music under sunny skies, waving banners, quickly gave way to special-needs nightmares. Colonial Williamsburg, after all, is not exactly wheelchair-friendly. In order to authenticate a Colonial-period town, the stores, houses and restaurants are built with stairs -- not ramps -- leading to their entryways. And a parade, with its accompanying noise and confusion, is not conducive to children with autism, who can become upset by loud noises or crowds.

But Toomey is not easily deterred.

Toomey spent countless hours arranging ADA-compliant hotel rooms, refrigerators for medications, and special permission to keep goats (they were walking with Mary's Family in the parade) in a $170-per-night hotel room; talking with parade organizers; arranging for tickets to the inaugural concert; setting up an appointment with Virginia's first lady Anne Holton; arranging for transportation in Williamsburg that could accommodate wheelchairs; and keeping the families in the loop.

Planning to leave early Friday morning, Toomey received word Thursday afternoon that 5-year-old Emily Gutierrez, one of her parade leaders, had been airlifted out of Coleman Elementary with a severe seizure (see accompanying story).

Heather Stubbs, whose brother Michael has autism and whose whole family planned to march in the parade, came down with a stomach virus at the last minute. The Rev. Jim and Dale Cirillo of Grace Episcopal Church had a parishioner lose a child, and then a volunteer lost his grandmother Friday morning.

Just getting out the door would have been enough to force the faint of heart to throw up their hands. But not the folks who make up Mary's Family. Every single family made the trip.

Changes, challenges and shifting plans seemed the theme for the weekend, with Toomey's cell phone ring tone as the soundtrack.

A delicious -- but dizzying -- dinner

Twelve of the Mary's Family entourage made reservations at the King's Arms Tavern, a fine dining restaurant in the heart of Colonial Williamsburg, complete with service staff in period costume and entertainment. With reservations set for 5 p.m., Toomey thought they would have plenty of time to eat before their next event -- the inaugural concert, featuring the Beach Boys, scheduled for 7:30 p.m.

"Some of us have autism, and some have wheelchairs, and let's see, what else? Spina bifida, and seizures and some of us are just plain crazy," Toomey explained to the waitress, relaxing into her chair.

But just after the menus were distributed, Toomey's cell phone starting ringing again. This time, it was a representative for the governor-elect's wife. If Toomey and the kids planned to present Holton with the Hawaiian leis they had made for her to wear during the Beach Boys concert, they would need to be at the concert hall in exactly 35 minutes. That gave the party of 12 only 35 minutes to order, be served, eat, pay and get to the concert hall.

Seven-year-old Chad Bobon, who has autism, had gotten his heart set on a cheeseburger, which was not available. Tearfully, he finally settled on just plain fruit.

As the group wolfed down their food and prepared to run out the door, one of the powdered-wig-wearing entertainers entered the room and began talking. Coats were snatched up and the party made a mad rush for the door.

"I did not mean to frighten you away," the surprised-looking entertainer apologized sheepishly to the fleeing backs.

"You are a lovely man, and you truly did not frighten us away," Toomey called over her shoulder as she bolted from the room, accidentally leaving the Hawaiian leis under her chair.

Party hearty, Beach Boys-style

After going back for the leis and then loading into the van, the company arrived at the concert hall a full 30 minutes late for their meeting with the first lady-elect.

Security still had to be passed and wheelchairs had to be guided over the electrical cords that were gathered into thick trunks backstage.

As group members trickled through the security screening, Jeffrey McCord, Toomey's son, noticed a man standing just outside of the backstage area, and asked the man if he was a Beach Boy.

"No," the man replied, pressing something into McCord's hand. "But I work for them."

McCord's face lit up as he looked at the Beach Boys' guitar pick in his palm, and he rushed to his father's side to show off his new prize.

While they waited -- and waited -- for Holton, the kids practiced their handshakes and greetings in preparation for meeting the first lady.

Well over an hour passed before Holton and daughter Annella were finally able to make their way down, but the children were thrilled when she turned the corner.

They proudly shook her hand, just as they practiced, and presented her with the leis.

Then the kids scooted out to join the rest of their group in the arena, and slid into their seats that were right on the floor, less than 100 feet from the stage.

They danced the night away, cheering loudly for each of the acts, smiling and laughing, before sleepily piling into vans to return to their hotel rooms.

Parade day pandemonium

Saturday morning, the parade participants awoke to a cold and rainy Williamsburg.

At the 9 a.m. meeting time, only five of the roughly 65 participants were at Toomey's room. She had already rushed off in her pajamas to collect the parade credentials, leaving her husband Jeff McCord in charge of the restless families.

"I don't have a long-sleeve shirt to wear," young Jose Gutierrez told McCord.

"We have medicines we have to take with food. We have to go get some kind of food. I can find you all later," said one parent.

Helicopters passed endlessly overhead, causing problems for some of the children with autism.

McCord passed out granola bars and spare shirts, hoping to keep some semblance of order until Toomey's return.

"We're just trying to put the 'fun' back in 'dysfunctional,' " he joked, while his son bounced on an exercise ball.

When Toomey returned, she quickly gathered the entire company together as cold rain sprinkled down over the families. She promised them that the rain was going to stop.

Families waited for hours until Toomey received the call to line up for the parade, and then everyone bustled down the street to the meeting spot. Even Heather Stubbs, who only moments before had been sleeping off a night spent awake with a stomach virus, joined the party.

"Everybody smile," Carina Elgin reminded the participants. "Remember, we're jolly! Even though it's cold and raining, we are so happy to be here!"

The baby goats hid under wheelchairs to escape the rain. Families huddled under umbrellas. Service dogs plopped down beside their owners, resigning themselves to getting soaked.

The kids were the next to embrace the rain, abandoning their umbrellas and the adults weren't far behind. With wind blowing the rain almost horizontally, the umbrellas weren't much help, anyway.

Spectators, who had watched Kaine's inauguration just before the start of the parade, abandoned the streets of Williamsburg to seek warmth and shelter.

Though the parade route was labeled handicap-accessible, the unpaved Williamsburg streets quickly turned to mud. Wheelchairs sunk into the mud, leaving volunteers and family members to lift the chairs out while trying to keep up with the pace of the parade.

As the Mary's Family group passed the grandstand, Gov. Tim Kaine propelled himself out of his chair and waved enthusiastically at all of them.

"Hi, Gov. Tim!" the kids called as they marched by, waving their congratulatory signs.

As they reached the end of the parade, cold and wet and hungry, the National Guardsmen directing the participants steered them in the wrong direction. The path, wide enough for a single wheelchair and made entirely of mud, sloped down two feet on either side.

The participants slipped and slid down the path, only to end up in a parking lot, alone and in the rain. Toomey said, "We'll just keep hiking. Our hotel is around here somewhere."

Volunteers had to lift wheelchairs over curbs and ditches, but the entourage finally made it to the hotel.

"I am so proud of everyone," Toomey said. "The bravery you guys showed today by sticking it out through the weather and everyone's illnesses and struggles is just amazing ... I could not be more proud."

For more information on Mary's Family, visit http://www.marysfamily.org or call (540) 364-4757.

E-mail the reporter: rstone@timespapers.com

©Times Community Newspapers 2006

Despite medical emergency, family makes trip

By Rebekah Stone

01/17/2006

Angela Arellano looked shocked when she learned that, due to security reasons, no bags of any sort were allowed in the parade.

"We've got a lot of Emily's medications in this bag," she said, gesturing to a small cartoon book bag hanging from the back of her daughter's wheelchair. Arellano shrugged and removed the bag from the handles of the chair. "We'll just have to give you your lunchtime meds now."

As she rummaged through the bag, listing off all the medications her 5-year-old daughter had to take, she explained that making adjustments to the plan is just part of everyday life for the Gutierrez family.

Dealing with the diagnosis

Emily was diagnosed at birth with spina bifida, a birth defect in which the spinal column is not completely closed. That, paired with hydrocephalus and a seizure disorder, causes Emily to need a wheelchair.

Already, she has had several surgeries and she faces another serious one this Wednesday at Children's Hospital.

But that's just life for Emily, her parents, and her brothers Jose, 11, and Isaiah, 3.

"I can't say life is too difficult right now," Arellano smiled. "We just take it as it comes ... I have a wonderful husband (Bulmaro Gutierrez) and three really good kids. That makes everything so much easier."

For her, "everything" has meant seeing to her daughter's medical care, caring for her two sons, helping her husband prepare for the American citizenship exam he took last Monday and working a full-time job.

But Arellano has a strong support system, thanks in large part to Mary's Family. The Gutierrez family has been a part of Mary's Family almost since its inception.

"The respite days are a huge help," Arellano said. "But while things are easy with Emily now, because she's little, by being with the other families who have older kids with the same disabilities, I can see where we're going to be."

And Mary's Family is always ready to spring to action in a crisis, Arellano said, which is exactly what she needed this Thursday.

Pre-parade panic

The family had been looking forward to the governor's inaugural parade for weeks. It was to be their own family celebration, after Gutierrez was awarded his citizenship last Monday.

But their plans to attend the parade almost had to be abandoned at the last minute.

On Thursday, Emily suffered a severe seizure at Coleman Elementary, where she attends school. While her parents rushed to be by her side, her older brother Jose spent the afternoon making placards for the parade with Mary's Family volunteer Xander Hart, in the hopes that the parade was still in the cards for his family.

"Generally, when you have a bad seizure, you get it out of your system and won't have one for a while," said Martha Toomey, founding director of Mary's Family. "So it was actually pretty good timing for Emily's seizure."

Luckily, Emily was released from the hospital, and the family packed up the following afternoon and headed for Williamsburg.

"I actually packed yesterday, kind of at the last minute," Arellano laughed on Saturday. "I think we're a little bit under-prepared ... It's hard to try to plan things in advance, because everything changes so quick."

But on Saturday, the family weathered the storm and marched proudly together down the parade route -- Jose waving his placard, Emily bundled up in her wheelchair, and Isaiah trotting along beside his big brother and parents.

It was another victory for the Gutierrez family.

"We're just so lucky," Arellano smiled, as the rain poured down. "We just don't sweat the small stuff. There's no sense in getting stressed or worked up about small things, or things that are outside of your control ...

"The important thing is that we're all together."

E-mail the reporter: rstone@timespapers.com

©Times Community Newspapers 2006

It rained on their parade

By Rebekah Stone

01/17/2006

Local respite group Mary's Family was invited by new Gov. Tim Kaine to participate in the inaugural parade on Jan. 14, and it rained on their parade. A lot.

"I have received word that this rain is going to pass," Mary's Family founding director Martha Toomey announced to the families, service dogs, volunteers and goats marching in the parade, with three hours until show time. "It should clear up and be 51 degrees at parade time!"

But the meteorologists couldn't have been further from the truth. The rain continued, paired with high winds and temperatures in the low 40s, as the clock ticked down to marching time.

Salute to special needs

As the only group in the parade representing people with special needs, the 65 people marching with Mary's Family (out of a scheduled 4,000 parade participants) had a huge responsibility, Toomey said.

"We are the only special-needs group that the Inaugural Committee selected for the parade," Toomey explained. "That means it is up to us to get the message out, and to raise awareness ... The parade organizers chose us for a reason, and that is to tell our story."

Founded in 2002 by Toomey, Mary's Family offers monthly respite care for local families with children that have special needs.

"We want to get out a message that the ADA (Americans with Disabilities Act) has to be enforced," Toomey said. "We want to make sure that programs for special-needs families are funded, and we want people to see that people are more alike than different."

'You can't plan the weather'

Though Toomey couldn't plan the weather, almost everything else had been meticulously ironed out prior to the parade.

"The Inaugural Committee, the Governor's Secret Service, the National Guard, the hotels where we stayed, the restaurants. Everyone was extremely helpful and accommodating," Toomey said. "It's not every day a hotel has to plan for service dogs, baby goats, refrigerators for medications and ADA-compliant rooms for large groups, but everyone that we had to deal with was great.

"We had to have a hand in everything, right down to our placement in the lineup," Toomey said.

Mary's Family had to march between groups that wouldn't be too loud, since loud noises can upset children with autism, Toomey said.

Certain children needed to be behind the group's parachute so the bright waving colors would keep their attention, although those same colors would upset others. Every single family needed special consideration to pull off the march.

While other parade participants had to line up in the rain hours before marching time, Mary's Family was allowed to join the lineup less than 30 minutes before show time.

But even with all the planning in the world, the weather wasn't the only unexpected speed bump the group had to overcome. Seizures, the flu and upset children were just par for the course, Toomey said.

"When you have a group like this you have to expect certain things. It's all about just keeping your sense of humor," she said.

A sense of humor came in handy for the participating families, who struggled pushing wheelchairs through Williamsburg's muddy streets and keeping cold and hungry children occupied during the parade's many starts and stops.

A slight misdirection by the National Guard at the parade's end sent the group on a bit of a nature hike -- through a maze of moving buses and a mud pit to a dead-end parking lot.

But all's well that ends well, Toomey said, and it was all worth it to see the governor's reaction when he saw that the group had stuck it out through the parade, while most of the spectators had opted to scurry for shelter.

Kaine, who has volunteered with the group, leapt from his seat in the grandstand, grinning and waved as the group filed by.

"He was genuinely happy to see us," Toomey smiled. "He was so pleased that we'd still marched, with the weather and all the other struggles ... Seeing that and the bravery of our families made it all worth it."

E-mail the reporter: rstone@timespapers.com

©Times Community Newspapers 2006