Here is a copy of a newspaper article that I instigated. I called up the paper and asked them if they would be interested in doing a story..and they were. It was probably the bravest thing I had ever done in my life until that point. Very risky, but well worth it..very positive :)
May 23, 2004
Looking Beyond The Surface
Record-Eagle/Douglas Tesner
Amy Murphy holds her son, 6-month-old Sebastian, in the living room of her Manistee home. Sebastian was born without his left hand and his mom has started a newsletter for families with children who are born without limbs.
Mom of child born without hand works to dispel myths
By TOM CARR
Record-Eagle staff writer
MANISTEE — Six-month-old Sebastian Murphy’s wide, blue eyes scan the stranger in his living room. He yawns and rubs his eyes with the blunt end of his left arm.
Seb, as his family calls him, probably doesn’t know he’s supposed to have a hand there, mother Amy Murphy said.
“It’s always harder on the parents than it is on the kid,” she said.
Seb represents the one of every 2,400 births in which a child is born with what is sometimes referred to as a limb difference, said Collette Staal, manager of Mary Free Bed Hospital’s Center for Limb Differences in Grand Rapids.
In most cases, the cause is not known, Staal said. In other cases, genetics may have played a part, or extremities may have been wrapped in utero by the umbilical cord or fibrous amniotic bands.
Amy wants people to look beyond what’s not there and see the bouncy baby boy who’s on the verge of learning to smile.
“Most people do a second glance,” she said. “People are curious. I don’t have a problem with that.
Record-Eagle/Douglas Tesner
Sebastian Murphy
“But when I took him to the mall, people in their late teens and 20s would stop and stare and point,” she said. “I thought that was rude.”
Amy herself had to get used to it when she first found out that Seb would be born without the hand.
She learned from an ultrasound about 20 weeks into the pregnancy.
“I didn’t know what his future held,” she said. “You grieve the loss of the perfect child you have in your mind.”
Her other son Elliott, 11, who had wanted a brother for years, reacted differently.
“He was sad for a moment, but then he said, ‘If anyone teases him, they’ll have to deal with me,’¡” she said.
Amy also took steps to prepare before Seb’s birth.
She had a lot of questions she needed answered:
“Is he going to make friends?”
“Is he going to be teased?”
“Is he going to be able to get a girlfriend?”
She looked for information on the Internet regarding children with limb differences or “congenital amputees.”
She contacted the center in Grand Rapids.
She read “Nothing to Prove,” a book by former major league pitcher Jim Abbott, who was born without a right hand; and “For the Love of Jody: Insight for Parents of Children with Limb Differences,” by Tamara Reyes-Muralles.
And she talked to the mother of a girl who has extra fingers on her hand.
“I asked, ‘Would I be able to accept him?’¡” she said. “She reassured me that as long as I love him, it’ll be all right.”
Yet none of that really prepared her for her own reaction once Seb was born.
“I still expected to see a perfect baby,” she said.
She had to “gradually get used to” it before taking him out in public, she added.
“The first couple of months were very hard,” she said.
Eventually, she started taking him places and has been impressed with how children respond he goes with her to get Elliott from school.
“I love the questions from kids, because they’re all well-meaning,” she said. “They’ll say, ‘What happened?’ or ‘Is he missing anything else?’ or ‘Will it grow back?’
“It’s not something to deny and overlook,” she said.
Amy doesn’t know what Seb will do when it’s time for him to start crawling, though she’s not worried. She figures he’ll naturally find ways to compensate. She also wants to make sure he never looks at it as a limitation.
“He’ll be able to do 98 percent of what other kids do,” she said.
Amy has also started a newsletter for parents of children with limb differences.
“I’m only a mother trying to do what’s best for her little boy,” she said.
For more information on limb differences, go to: www.limbdifferences.org; www.amp-info.net; or www.ontheotherhand.org.
