Woman will mark amazing 26th birthday
JEFFERSON TWP — “I can't believe my baby will be 26,”said Beverly Carr.
But the Saxonburg Road resident knows she's lucky to be able to celebrate daughter Amber McCreary's 26th birthday on Christmas Day.
Amber wasn't expected to live beyond her toddler years. She was diagnosed with lissencephaly, or smooth brain development, when she was 2 years old, about the age many children die from the disorder.
“She was born with it, but we didn't know until she was almost 2,” Carr said. “She started having seizures when she was 2.”
Carr said medications helped keep Amber's seizures under control, for a while.
At age 5, Amber could walk, talk and was a cheerleader for a youth football team.
But once Amber reached early adolescence, her seizures became more frequent, more severe and longer lasting.
“They could last for hours. There were times when she was placed in medically induced comas to get her out of seizures,” Carr said.
“We were calling 911 constantly to take her to (UPMC) Children's Hospital,” Carr said.
“Her surviving is an absolute miracle,” she said. “The seizures slowed down a little bit as she turned 20.”
But the damage had been done; the seizures Amber endured caused extensive, irreversible brain damage.
Amber is in a wheelchair, although her mother says Amber can walk with some assistance.
She can't talk and still has seizures every day that necessitate her being belted to either her wheelchair or her bed when she sleeps.
Amber requires 24-hour care. She can't feed herself or take care of any of her needs.
“Amber's my daughter. There's that connection since birth,” Carr said. “I was years in mourning before accepting Amber for who she is.”
Carr said that while Amber cannot laugh or smile anymore she makes noises, “cooing,” all day long.
“When she hears my voice, she looks at me. She cuddles her head into my chest. She's like an infant in a woman's body,” she said.
Amber spends Monday through Friday at Austin's Place in Saxonburg, a day care program for young handicapped adults. But in the evenings and weekends, Amber's care is the responsibility of Carr, her husband, Steve, and Amber's brothers and sisters, Austin Warman, 23; Brandon Blystone, 22; Tyler Blystone, 20; and Makenzie Blystone, 19.“They just love Amber so much; they are still helping,” said Carr, even Austin, who no longer lives at home.Amber's siblings have to pitch in, Carr said, because recently it's been hard getting overnight nurses because of staffing shortages. “I really hit the jackpot with those four,” their mother said.“Amber's care takes a whole family unit to run it from morning to night,” she said.Amber's siblings pitch in and help with Amber's medication or feed her when their mother can't.“It's not hard. It's just kind of normal for me,” Makenzie Blystone said. “I was the youngest, and growing up it was the only thing I knew.”
Amber's family considers themselves lucky.“She's very healthy besides the seizures,” Carr said. “There are no cardiac or breathing issues that most smooth brain kids have.“Amber can still eat by mouth and doesn't have a tracheotomy,” she added.She enjoys sitting at the table with her brothers and sisters at mealtimes and watching television and listening to music.On Saturday, her family will celebrate Christmas in the morning and Amber's birthday in the afternoon.“Me and my husband and the kids will have our Christmas in the morning, have a big breakfast and decorate the house for Amber's birthday,” she said.“We'll have the traditional ham dinner. She likes ham and mashed potatoes and gravy. She likes gravy on everything,” she said.“That's pretty much our Christmas,” said Makenzie who plans to enroll in a program at Children's Hospital next year to become an electroencephalogram (EEG) technician.Makenzie herself has had epileptic seizures, although she said that while she had one in January, it had been seven years between seizures.Carr said, “Makenzie has epilepsy, so when she started having seizures, it scared me obviously.“We went to the same doctors, went through genetic testing. There were no genetic links between the two. We got two flukes,” she said.
But the new year will bring new challenges for Amber and her family.Amber has been treated by doctors and staff at Pittsburgh's Children's Hospital for the past 23 years, but Amber and her records will be transferred to UPMC Presbyterian.That's because Amber has “aged out” at Children's Hospital.If something happened now, she wouldn't be able to be admitted to Children's.Twenty-three years' worth of records will need to be transferred, which Carr called an ordeal.Still, despite the work and worry caring for a special-needs child, Carr said, “We can't picture a life without Amber in it.”
