Mother talks of raising four special-needs kids
BY JASON ASHLEY WRIGHT World Scene Writer
Monday, November 05, 2012
11/05/12 at 4:20 AM
TIAWAH - "What are you playing, Adam?" Deb Marcotte asked her son.
"Angry Birds," the 11-year-old responded, not looking up from an iPad.
Deb smiled at him from the kitchen table where she sat with her husband, Donald. It was Halloween night, and Adam would soon be strapping on his ninja outfit to go to a trunk-or-treat event at church.
Twin sisters Allison and Emma, 8, were running around - Allison in her witch's dress, Emma as a princess. Brennan, 14, was in the backyard - a bit too old for trick-or-treating, Deb speculated.
Other than the date on the calendar, it was a relatively typical day at the Marcotte house. Perhaps the calm side of typical.
"I call them my crazies," Deb said of her four kids, then laughed. She has a bright sense of humor, which came in handy while penning her book about the kids, along with writer Brent Youngs.
In "Gifts of Grace" ($17.95, West Bow Press), Deb chronicles the trials still unfolding with Allison, who has Moyamoya, a progressively degenerative disorder of the brain in which the brain doesn't receive enough blood flow.
But all four of the Marcottes' children have special needs - and each a different one. Often, two.
Brennan
Deb and Donald grew up in Inola. He graduated from high school there in 1986, she in '87.
They went their separate ways but later reconnected at a party he threw in his Tulsa apartment.
Now, they've been married 21 years. She's a public school teacher in Inola; he works for American Airlines.
When she was pregnant with her firstborn, Brennan, everything was fine. Years later, though, the Marcottes noticed something might be wrong.
Brennan was having troubles ranging from leaving out milk to forgetting to wear a shirt under his coat. The latter incident prompted them to take Brennan to a developmental pediatrician, who immediately diagnosed him with attention deficit-hyperactivity disorder, or ADHD.
The doctor prescribed a drug, Vyvanse, that worked "perfectly," enabling Brennan to focus.
Not long after that, though, he was diagnosed with Hashimoto's thyroid disorder, which causes a child not to reach puberty until about three years after his or her peers, Deb said.
"It was hard on him," Deb said. "He wasn't able to do some of the things he had always wanted to do" - like eighth-grade football. Brennan wasn't even 5-feet-tall, but the other guys were often topping 6 feet.
But he has a "passion," Deb said, and a sense of fairness, a spirit to volunteer, a heart for children with special needs.
"He sees how much his sister has suffered and how many surgical procedures she has had to endure," Deb said.
Adam
When Adam was young, he was "obsessed" with Thomas the Train.
Now, it's Legos - including 190 Lego people, of which he keeps count on a piece of paper in his room. He showed us the Lego city he built and his favorite Lego set.
"We knew he was always a little quirky, but he was functional," Deb said. "He had at least one good friend, but he was never really invited over for play dates and wasn't interested in having play dates at the house."
At age 2, he was diagnosed with apraxia, a brain and nervous system disorder in which a person can't perform tasks or movements when asked. At age 4, he was diagnosed with integration dysfunction.
In third grade, Adam was diagnosed with autism.
He has problems with relationships and pragmatic language and has trouble with explosive anger over anyone touching his Legos.
It's a reason he can't have friends sleep over.
"Adam just cannot handle it," Deb said. "We have never been to the fair with the kids because it is too overstimulating. Even school carnivals are often overwhelming."
Adam "amazes" Deb daily.
"He thinks about things in ways that I would have never have thought of. He can build anything by following the directions and also chooses to snuggle me, even though he has autism."
Allie and Emma
When Deb was pregnant the third time, an ultrasound at 17 weeks revealed she had twins.
It also revealed that Emma was "stuck" - doctors couldn't see a membrane between the two babies. A week later, Deb and Donald were in the office of a specialist who diagnosed them with twin-to-twin transfusion syndrome. They only had a 20 percent chance of survival.
"I would go home with two babies or none," Deb told us in her hallway after pointing out the twins' baby pictures from the hospital.
Deb had 13 amnio reductions, 10 weeks of bed rest, three of which were in the hospital.
"We knew if they survived, they would be early," Deb said.
Once they were born - Emma at 1 pound and 15 ounces - the girls spent eight weeks in the NICU at St. Francis Hospital.
By age 2, preemies typically "catch up" to their peers, Deb said. Emma didn't, and Allie was not that much bigger. So it was off to an endocrinologist, who found that Emma lacked a growth hormone and had thyroid problems, for which she takes nightly medication.
In 2008, Allie had a massive stroke.
"The doctors ran every test you could imagine to find out why her carotid arteries had dissected," Deb said. They found on the MRI evidence of old strokes - several - that had been there for years, although they couldn't determine exactly when they happened.
At first, doctors said it was not Moyamoya. After the second stroke, though, they confirmed it.
"I had never heard of Moyamoya in my life," said Deb, who looked online for a definition. She learned that without surgical intervention, patients continue to have strokes until they either become completely incapacitated or die. "I was sick to my stomach," Deb said.
Moyamoya is extremely rare, but Allie's doctor is a leading expert in surgeries to restore blood flow to the brain. Of the 800 surgeries he has done, he has only had to redo four, including Allie.
Progress and perspective
Emma is doing well at school, reading and writing well, Deb said.
Aside from her growth, Emma's special needs involve pragmatic language, for which she has speech therapy.
Allison's continual stroke and transient ischemic attack (TIA) activity has been life-altering for the entire family.
"She has had to have multiple hospital stays, as well as five brain surgeries, all out of state," Deb said - one in Texas, four in California.
Being away from home, her husband, her job and the children took its toll on Deb, she said. "I have almost developed a phobia of hospitals," she continued. "The smells, sights, the drive there makes me nervous. I almost hold my breath without realizing I am doing it."
She doesn't know from one day to the next if Allie will have another stroke, another TIA.
"It is difficult for everyone to have a sister who, at any point, might not be with us," Deb said. "They know that if she gets really upset, she is more likely to have a TIA."
On many occasions, Deb has just wanted to pull the covers over her head and give up.
But that's when she turned to prayer, at her lowest times - like wrestling with naming the twins before they were born, knowing they likely wouldn't survive.
She kept praying, as did her family and friends.
"I cherish each and every day I have with my children," Deb said - "find joy in listening to them sing, tell me stories, read to me or hearing, 'Mom, I want to cuddle you.' This gives me strength to continue to fight for them, to continue to do everything in my power to ensure that they have the opportunity to reach their full potential, whatever that may be."
For more, see Deb's blog at tulsaworld.com/giftsofgrace
‘GIFTS OF GRACE’
Meet Deb Marcotte, who
wrote about her four children
with special needs.
4-6 p.m. Nov. 15
The Apothecary Shoppe, 510
N. Elm Place, Broken Arrow
For more, 918-449-9988; or
visit Marcotte’s blog,
tulsaworld.com/giftsofgrace
Original Print Headline: Little miracles
Jason Ashley Wright 918-581-8483
jason.wright@tulsaworld.com
Associated Images:
Deb Marcotte looks at photos of her newborn twin daughters, now 8, at her home near Claremore last week. She is a mom of four, and all four kids have specific special needs. MICHAEL WYKE / Tulsa World
Deb Marcotte talks about her life, kids and book at her home near Claremore. MICHAEL WYKE / Tulsa World
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