|Mom's Bond with Twin Born With Half a Face Loving and Strong|
|By SUSAN DONALDSON JAMES (@SusanDJames)||Feb 20, 2013, 4:11 PM|
The Machin boys are identical twins, but Harry was born with a rare disfigurement: his left eye, ear and nostril never fully developed.
Now that they are 7, Harry's face makes no difference to his twin Oliver, but their mother struggled for two years to love them equally.
"When I cuddled him for the first time, waves of terror swept over me," said Charlene Machin, 33, of Staffordshire in Britain. "How could I possibly love this little boy when he looked like this?"
"People assume that maternal instinct kicks in as soon as you hold your child for the first time -- but mine didn't," she told the Daily Mail newspaper. "I just couldn't love my son when he looked like this. Instead I just felt grief -- grief for a life that I felt had been taken from me, a normal life that should have been Harry's."
ABCNews.com talked to Machin's husband, Mark Machin, who did not want to participate in an interview. He said his wife was out of the country.
Today, her bond with Harry is loving and strong. But Machin's initial response, then her adjustment, illustrate the ways in which parents deal with the surprise of having a child who is disfigured. Advocates say that honest stories like theirs help others to accept the disabled.
"Being surrounded or having contact with people with disabilities could have made the transition easier her," said Lawrence Carter-Long, spokesman for the National Council on Disability. "Part of the problem is [the disabled] are segregated, if not by institutions, then by attitudes. We don't see them in the work place or in school, so the fears and the worries are more pronounced. It's not an issue of malice, but of proximity."
Disability can mean anything from a genetic disorder like Harry Machin's to aging parents or injured soldiers who return from wars in Afghanistan and Iraq. And anyone, in an instant, can face paralysis after an accident, according to Carter-Long: "Superman falls off a horse and joins the club."
Both Kevin Irvine and his wife Karen Tamley, who live in Chicago, are disabled and have an adopted daughter with a severe facial disfigurement.
"There is no typical way to respond when you discover that someone close to you has a disability, especially something significant," said Irvine, 43.
"People on the outside shouldn't be judgmental," he said. "Unless they are going through that, they can't understand."
"The thing that is heartening, is to see that most people, at some point, realize that living with someone with a disability is different than the way you may have expected, but it's rich and fulfilling," said Irvine. "There's love -- ultimately, it is your child.
Dominika has Apert syndrome, a genetic disease characterized by facial malformations, fused fingers and toes, and a skull whose plates bond prematurely so the brain has no room to grow.
Kevin Irvine and his wife Karen Tamley with their daughter Dominika.
Tamley, 46, is commissioner of the mayor's office for people with disabilities and Irvine, who previously worked in advocacy, is a stay-at-home father.
He was born with hemophilia and in high school acquired HIV and Hepatitis C from blood transfusions. Tamley uses a wheelchair because she has a rare disorder of the lower spine.
Because of their disabilities, the couple decided to adopt. They worked with an American agency because they feared an international agency might not accept parents with health conditions or might "change the rules" mid-way through the process.
"We weren't looking to adopt a child with disabilities," said Irvine. "But we had no preconditions. Just like anyone else, we wanted to be parents."
Disabled Parents Raise a Child With a Facial Deformity
Dominika's birth parents placed her for adoption at The Cradle in Evanston, Ill., where she stayed for five months before Irvine and Tamley were approved as adoptive parents.
"We fell in love with her and brought her home," he said.
Still, parenting has not been easy. Besides facial disfigurements, Dominika has scoliosis, fused shoulders and mild hearing impairment. She's had over a dozen surgeries and procedures.
"It did take an adjustment for us to some extent," he said. "We certainly didn't know what our baby would be like. "
But the hardest part is watching Dominika cope with unwanted attention.
"When she was younger, she was pretty oblivious," he said. "But around 5, she started feeling it more. Kids make remarks or stare. Kids come and point and bring friends to look at her."
Just last week at an indoor playground, a child looked at her face and screamed, "Ewww!"
"When I am on the scene, I make a comment," said Irvine. "We told her that if she hears that, she should let them know it hurts her feelings -- it's an important way to disarm them. She can also introduce herself -- when kids know someone's name, it does help."
Irvine said it was "unrealistic" to expect people to be instantly comfortable with a severe facial disfigurement. "People feed off your attitude and how you act. If you are comfortable, they will feed off that."
In the case of the Charlene Machin, he said no one should judge her for not immediately loving her child, and he was inspired by her sharing the story.
"We need to tell our stories," said Irvine. "More of us are living openly out there and it is easier for families like the one in England to get to a place of acceptance when they are surprised by disability."
Today, Machin is unequivocal in her love for both Harry and Oliver, but it wasn't' easy.
In the first stroller rides around town Harry faced unwelcome points and stares. Some even screamed after seeing the child, she said. Machin blamed herself.
But things changed when the twins were about 18 months old. Machin was in a mother's store when children surrounded her to look at the twins.
"I felt like the Pied Piper as I walked through the store with them behind me, staring and pointing," she said. "I'd had enough. It was time to help Harry face the world. I swung the buggy round and said, 'This is Harry'.
"The children asked what was wrong with him, so I told them. And afterwards I felt stronger. Instead of trying to hide my son away, I'd faced it head-on, and I felt better."
Harry has now had three successful surgeries to reposition his eye socket. Next year, doctors will stretch his eyelid and fit it with a prosthetic eye.
His mother said she recently overheard Oliver say to one of Harry's tormenters, "He's my brother. It doesn't matter what he looks like."