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FOR THE Love Of Matthew

PHOTOS COURTESY THE BARNETT FAMILY

How a Farmville, Va., family is blessed by a local food pantry

Nov./Dec.

by Laura Emery, Staff Writer

Michael and Crystal Barnett of Farmville, Va., were exhausted after three months of doctors’ appointments for their newborn son.

But the end was in sight. They had one last appointment to get through, with a geneticist.

Michael remembers that day clearly: “The assistant said to us, ‘I bet you guys have a ton of questions.’”

“Nope. Just one question,” Michael responded.

“Why are we here?”

When the geneticist came into the room, the question was answered with the heaviest, most excruciating words the new parents could have imagined.

PHOTOS COURTESY THE BARNETT FAMILY

“Your child won’t ever have any intelligence. He will not ever do any of the basic functions that a child can do. He won’t likely live past the age of 2,” the geneticist told the Barnetts that day.

Matthew was diagnosed with a rare genetic disorder called Williams syndrome. The disorder is characterized by varying levels of intellectual disability, unique personality characteristics, distinctive facial features, and a slew of cardiovascular problems. Matthew’s case was extreme. At 3.39 megabases, Matthew has one of the largest deletions on the East Coast.

But that wasn’t the end of it. Matthew was also diagnosed with autism. “There was a very long list of things that were ‘wrong’ with our son. It was overwhelming and very scary for us,” Crystal says.

FAST FORWARD

Matthew is 8 years old now. His family nicknamed him “Punk.” He is fascinated with wheels and loves dinosaurs, watermelon, pizza and music.

“People with Williams syndrome have a genetic love of music. He’ll be listening to a song and halfway through it, he’ll start crying. But if we stop the song, he wants us to play it again. They feel music very deeply,” Michael explains.

PHOTOS COURTESY THE BARNETT FAMILY

“He’ll be listening to a song and halfway through it, he’ll start crying. But if we stop the song, he wants us to play it again. They feel music very deeply.” – Michael Barnett

Matthew’s favorite tunes include any Pentatonix song, except “Hallelujah.” His dad’s soft voice brings him such joy every night before bedtime, singing everything from Johnny Cash hits to Cookie Monster’s “C is For Cookie.”

When Matthew feels happiness, it shows all over his 87-pound body. “He lights up when you sing to him, and you don’t even have to be a good singer,” Crystal points out. “Sing him a song, any little song, and he’ll be your best friend.”

The tightly knit family includes Matthew’s brothers Martin, 16, and Christopher, 20. “My wife stays home to care for Matthew and homeschool our son Martin,” says Michael, who works as an information security analyst for Longwood University.

While Matthew is non-verbal, he communicates his needs and moods to those around him through eye contact, gestures, touch, positioning and posture, mood, and sounds with varying pitch, rhythm and tone.

People with Williams syndrome can feel anxious over stimuli such as the sound of paper crinkling or the texture of food. For Matthew, the mere sound of a car engine in reverse can cause tremendous anxiety. The sound of an airplane overhead also upsets him.

But the family chooses to focus on the progress their son continues to make. “We’ve come a long way. God is good,” says Crystal.

THE CHALLENGES

The Barnetts have grown accustomed to “the stares,” and the occasional insensitive remarks.

“Matthew learned to walk when he was 2 years old, but it wasn’t a stable walk where we didn’t have to worry about him falling with every step. We used to put him in a push-around car on wheels, and people would come up to us and say, ‘Your son is old enough to walk now,’” Michael recalls.

Even though Matthew can now walk, he still requires the use of a wheelchair. The family registered for handicap tags for their vehicles, so that it would reduce the distance their son has to walk. “Matthew has low muscle tone and loose joints, so he will randomly start limping. The longer he has to walk through a parking lot, the harder it is on his heart, his joints and his muscles. But when people see us get out of a car with handicap tags and our son is walking, we get the judgmental looks,” Michael says.

PHOTO BY LAURA EMERY

Life with Matthew involves a lot of doctor’s appointments, and the Barnetts have visited hospitals all over Virginia. Michael says, “Matthew also has another deletion of his third chromosome, but there are only 50 people in the world that they know of who have it, so they don’t know a lot about it. So we are faced with the unknown a lot.”

For the difficult times, the Barnetts find comfort in their faith, and in the love and support of their community.

“Romans 5:3-6. I memorized it, and I refer to it any time I find myself questioning why this had to happen to my son. The Bible verse says that either tribulations build perseverance, character and hope in us, or someone else is watching us go through something with a good attitude and asking themselves what is different,” Michael shares.

Crystal says, “Our faith has helped us through our journey with Matthew, and also knowing that our son was made this way for a reason. And that nothing needs to be done to ‘fix’ him. We hear a lot of well-meaning comments like, ‘We’re praying that God will fix Matthew.’ I think the biggest thing we wish people understood is that our son doesn’t need ‘fixing.’ God made him this way, and we love him exactly the way he is.”

ENTER COVID

When COVID-19 started its deadly spread. Michael and Crystal say they were very scared.

“Cutting a tooth puts our son in the emergency room, the common cold puts him in the hospital for 10 days, the flu could be deadly for him, so we were afraid of what living through a worldwide pandemic would look like for us,” Crystal says.

During a time of fear and uncertainty, FACES Food Pantry, in Farmville, Va., was an unexpected blessing to the family.

An all-volunteer organization, FACES is the largest food pantry in Southside Virginia, and currently serves about 750 individuals a week. “Our motto is ‘Neighbors Helping Neighbors,’ and we endeavor to live that in every outreach,” says Joanna Baker, FACES Food Pantry co-president.

Tony Atkins (left), Southside Electric
Cooperative member, shows up every
Saturday in Farmville to help load groceries into vehicles. PHOTO COURTESY JENNIFER WALL

The group does weekly food distribution at its two locations — Farmville and County Line (Abilene) — but also delivers to more than 75 households in specific complexes designed for the elderly or adults with disabilities. FACES was founded in 1981 and is supported through voluntary labor and generous monetary contributions from the Farmville area.

The Barnetts struggled with the idea of using a food pantry. “We didn’t want to take from others who were worse off than us. But, let me tell you, that one box of food — it was a huge weight off our shoulders. With a special-needs child and all the costs that go along with that, being able to get fresh produce and meat is one less thing we have to worry about. We are so incredibly grateful to Joanna and her husband, Paul, and their team of volunteers for all they do for the community,” Michael says.

The volunteers at FACES are there every Saturday morning, rain or shine.

Tony Atkins is just one of the friendly faces that greets clients, like the Barnetts, on Saturdays. A Southside Electric Cooperative member, Atkins works an exhausting overnight shift at his local Walmart and, during the day, cares for his wife,Michele, who has a disability.

He also relies on food provided by FACES, and faithfully helps load groceries into clients’ vehicles every Saturday in Farmville. “I like being able to help our neighbors, because they help us out,” Atkins says. “It gives me a good feeling.”

Joanna Baker and her husband, Paul, are co-presidents of FACES Food Pantry, an organization that plays a huge role in the local community. PHOTO COURTESY FACES

Jennifer Wall, communications specialist at SEC, has been volunteering at FACES for many years. “It’s a tremendous organization. Joanna and her husband, Paul, are such inspirational people, and are very community-oriented,” she says.

SEC has generously supported FACES, as many of FACES’ clients are SEC members. In 2020, the co-op presented FACES Food Pantry with a $7,500 contribution, which CoBank matched through its Sharing the Success program, resulting in a $15,000 donation. The funds went toward purchasing four large chest freezers and racking to store frozen and dry goods.

In accepting the donation, former Board of Directors President Ellery Sedgwick said, on behalf of FACES, “Southside Electric Cooperative and FACES share essentially the same goal: to improve the quality of life in the Southside region by cost-efficiently providing basic necessities, electricity and food. SEC serves approximately 55,000 households and FACES around 1,500, but both provide crucial services to the public.”

Matthew is just now learning to chew, his father explains because his autism and sensory issues mean introducing new foods can take as long as six months.

That makes Joanna’s reaction even more special. “Joanna knows about this and she goes above and beyond and tries to find new things for us to try to introduce to him. She actually has a little box that says ‘For Matthew.’”

“Every mother wants their child to be happy and healthy and develop properly, of course, but I’m glad I wasn’t given that choice because I would have missed out on a lot of Matthew being who he is.”Crystal Barnett

Joanna says it’s all a part of FACES’ mission. “I simply put together a variety of things that I thought Matthew might like and would be able to eat. As he met his food challenges, we shifted our offerings to include more appropriate items. Here at FACES, we are very slowly moving toward improving our processes so that we can serve our clients better, according to their needs,” she says.

The Barnetts feel comfort in knowing that when money does get tight due to inevitable medical expenses, that, come Saturday morning, they will be able to rely on FACES for food that is important for the health of their family.

A SPECIAL GIFT

While there have been many, many challenges along the way, Michael and Crystal can’t imagine life without Matthew.

“We’ve taken it day by day, and it’s been a blessing. We’ve learned that the doctors don’t know everything. And while the doctors told us all of the negative things about our son’s condition, we’ve come to appreciate all the positive things about our son’s condition,” Crystal says.

She goes on to say that she’s glad she wasn’t given a choice in the matter. “Every mother wants their child to be happy and healthy and develop properly, of course, but I’m glad I wasn’t given that choice because I would have missed out on a lot of Matthew being who he is, if we had chosen for him not to have Williams syndrome.”

Matthew’s name, of Hebrew origin, means “Gift of God.”

The Barnetts say that having Matthew has allowed them to see the world through his eyes. “And to see the good in others. I’m not sure that if I didn’t have a child with Williams syndrome that our family would be as compassionate, or that we would be as grateful as we are for every day of life. Plus, we can’t imagine Matthew any other way,” Michael reflects.

“Each day with him truly is a gift.”

WILLIAMS SYNDROME

Williams syndrome affects an estimated 1 in 7,500 to 10,000 people and is caused by the loss [deletion] of genetic material from a specific region of chromosome 7. Most people with the syndrome are missing 1.3 to 1.8 megabases (a measurement of length of DNA, which carries vital genetic information).


For more information on Williams syndrome, visit williams-syndrome.org.

For more information on FACES, visit facesfoodpantry.com.