By Kristy Robinson Horine
Special to NKyTribune
If she’s said it once, she’s said it a thousand times.
“Wash your face. Brush your teeth. Put your coat on.”
Most mothers nod their heads in agreement. They know well this verbal morning ritual. But for Denna Imad of Lexington, the thousand-time recitation happens in about an hour. Quite literally.
Imad’s second child, Tariq, has Attention Deficit Hyperactivity Disorder and High-Functioning Autism.
“Constant reminders – that’s his daily,” she says.
Imad doesn’t complain, though. She simply turns and reminds Tariq about his face, his teeth, and his coat one more time. This is her life. This is her family. And she’s not up to trading places with anyone anytime soon.
Tariq is 11 and in the fifth grade. He was diagnosed with ADHD at the end of his first grade year. It wasn’t until this past October that the family learned of his autism.
Stacey Combs, Jennifer Miller, Jessica Hosfield,Tanya Lenetz, Ashley Martin, Denna Imad, Jamie Gray, Tina Pickard, Heather Bunton,
Front:
Brianna Tenges, Cynthia Watts, Heather Amos, Joyce Crowe, Jamie Gray, Susan Mahoney (Photo by Kim Mosely)
While Imad and her husband, Bassam, have developed a routine over the years to help Tariq become the best he can be, their understanding of having a child with special needs began years before, with Destinee.
Destinee is Imad’s oldest child and is now a junior at Transylvania University. When Destinee was in the first grade, her teacher contacted Imad to let her know Destinee had stopped using her right hand to write in school. After several months, Imad learned that at the tender age of six her daughter had suffered from a stroke.
“There was no known cause, but it changed things because she had to start doing occupational therapy and physical therapy,” Imad says. “When you first get into the medical world, you don’t know anything. You just take in what you can.”
It was this experience with Destinee that helped to prepare Imad and her husband for what was to come. The couple has four children, Destinee (21), Tariq (11), Zaid (7), and Laith (4). Zaid is the only child out of four who does not have a special need.
“Poor little guy. We schedule special time for him so he doesn’t get left out,” Imad says, but then she fills the room with laughter as she shares her joy of being a parent to such remarkable children.
The Long Road to Remarkable
Four years ago, Destinee was nearly finished with high school, Tariq had just been diagnosed with ADHD, and Zaid was zipping along, finally out of the awkward toddler stage and looking forward to starting school. Imad and Bassam were about to embark on a brand new journey with their fourth child, Laith.
“It was a normal pregnancy,” Imad explains. “As soon as he was born, everything went crazy.”
During Laith’s first few moments outside the womb, doctors realized he couldn’t take a breath. In addition, he had a heart murmur. His tricuspid valve was too short, so instead of pumping the blood away from his heart, the blood flowed back in. By the time Laith was three months old, Imad and her husband began to notice something else.
“His head started growing really fast,” she says. “After having three other children, you just sort of know when something is not right.”
An ultrasound on the baby’s soft spot revealed a five centimeter aneurysm.
The technical term for Laith’s newly discovered condition is called the Vein of Galen Malformation, an extremely rare but serious condition with no known cause.
“Normally, babies with this condition are born with heart failure. Luckily, he wasn’t,” Imad says.
In order to correct the malformation, doctors must use special glues and coils to close off the arteries and veins to allow for normal blood flow to resume in the brain. Each surgery typically runs between six to eight hours, with massive amounts of radiation exposure to the child, and, since every child is different, the corrections can take anywhere from one to 25 surgeries. And, since the condition is so rare, very few doctors and hospitals have the capabilities of performing them.
Imad says she was fortunate that help was available at the Cincinnati Children’s Hospital. Laith had two surgeries in 2011, three surgeries in 2012 and a final imaging surgery in 2013 to confirm the malformation had been closed.
Even though doctors were able to correct the malformation, there were complications. The surgery that healed him also caused a stroke, some of the glue was washed into the back of Laith’s brain, and the encephalopathy has caused some delays in cognitive and physical function.
Through it all, Imad and Bassam never complained. When they first learned of the long road ahead, they made a pact with each other that no matter what, they were going to get through whatever came next. And Imad, a naturally positive person, found hope and help in a beautiful perspective.
“When we went to Cincinnati Children’s Hospital, that humbles you. During one of his surgeries, we were there for ten days and I just wanted to go home,” Imad says. “I walked out to take a break and I met a mom who had been there for two years. I shut my mouth and said, I will never complain again.”
Still, one of the hardest parts for Imad is forming relationships with other mothers and for others to understand that, though her children don’t have a visible disability, they do have special needs.
Home life is also complicated.
“At home, you’re always on your toes. They teach you how to parent them,” she says. “Any time anything happens – medically, in any family, it takes a toll on everyone eventually. Mentally and emotionally. I would not have been able to hold all this together were it not for my husband.”
While Bassam, a small business owner, is a great support to his wife and family, there was another, different type of support just this past weekend that surprised Imad.
A Little Help From Her Friends
Angie Smith, this year’s Might Moms Chairperson, joined the Lexington Chapter of Altrusa International about 15 years ago. Altrusa is a world-wide club of everyday people from all ages and walks of life who seek to make a difference in the lives of those around them through service to others. Different projects include community literacy programs, disaster relief, and local projects like helping with the Hope Center and working with humane societies.
Smith had witnessed the joy her mother had experienced in Altrusa since the mid-seventies, and wanted that for her own life as well.
Smith is the owner of KPC Architectural Products, based in Lexington. During her tenure as an Altrusan, she has worked on many committees, but one in particular touches her heart more than anything else – Mighty Moms. Mighty Moms is a joint effort between Altrusans and community partners who team up to give support and fellowship to mothers of special needs children. Mothers like Denna Imad.
Smith and her team work diligently throughout the year to make this annual weekend one of the best possible for the group of fifteen mothers who are nominated by different groups in the community. The mothers are treated to an all-day Saturday event, an overnight stay at a local hotel and breakfast on Sunday morning.
This year, during the final weekend in February, the Mighty Moms Committee members were able to secure reduced-rate rooms at The Hilton at Lexington Green, lunch at The Cellar at Lansdowne, dinner at Wines on Vine, a scavenger hunt at The Arboretum, and pampering sessions from various hairdressers, massage therapists and manicurists. In addition to this twenty-four hour fellowship and support, Amanda Jason with Lexington’s Wells Fargo provided breakfast for the mothers on Sunday.
“It just feels good to do something good for someone else,” Smith says.
For mothers like Imad, and fourteen other women during this weekend, a break for just one night is a blessing indeed.
Imad has not spent one night away from her home and her family aside from those nights in the Cincinnati Children’s Hospital with Laith. When she learned that she had been nominated as a Mighty Mom by Laith’s special education teacher at his school, she was humbled yet again.
“You don’t think that what you’re doing is anything special. You just think, this is my job. These are my kids. When someone else thinks you’re doing a good job, it’s very touching,” she says. “As long as my family is happy and healthy, that has always been enough for me.”
This past weekend, Imad was able to take a break from her everyday normal and focus on herself and meeting others who understood the struggles and the joys of life with special needs children.
“Altrusa International are the most generous people ever. They did so much for us. It was overwhelming,” she says. “Just being away is nice, but this was something I will never forget.”
Imad found a new community of other mothers who understood the difficulties and triumphs of everyday life.
“It was neat to be honored and treated special for something you just do. It was a good reminder to take time for myself,” she says. “The scavenger hunt gave us a chance to act like kids, which is something we normally wouldn’t do.”
More than just one night, though, is the long-lasting value Imad will carry with her from this special weekend. It solidified the relationship with her husband because he took care of everything with the kids and the house. She is already thinking about who she can nominate for next year, and she’s even interested in spreading the word about Altrusa and the good work they do.
For all those involved — from the mothers who have found a new sense of community, to the Altrusans like Smith — giving and caring is mighty indeed.
Kristy Robinson Horine is a freelance writer living in Paris, Ky.