The Newly Diagnosed: Raising Ella
Ella appeared to be the healthy, happy baby her parents had always dreamed of having. By the time the little girl was 6 months old, however, she had fallen off the growth charts. The baby's new pediatrician, a doctor who had experience with cystic fibrosis patients, saw the red flag and ordered a sweat test. The results of the test shocked Ella's parents.
“Everything came to a screeching halt,” remembers Jon, the little girl's father. He and his wife, Lindsay, like so many other parents who receive the news that their child has cystic fibrosis, felt their world morphing into the unbelievable.
“It was like the first 6 months of her life, where we thought we had this picture-perfect little family, it was like the rug was pulled out from under us,” says Lindsay.
Even more difficult was the fact that more than a thousand miles separated the young couple from all of Ella's grandparents, an important support piece for many families grappling with CF.
During the difficult months following Ella's diagnosis, Jon continued to work as a year-round YMCA camp director while Lindsay stayed home with Ella, doing the baby's therapy, monitoring her health, and driving 45 miles to the nearest CF clinic for appointments. A sense of despair and isolation began to color the couple's outlook. That's when Lindsay's mom called with the invitation that started the floundering family's journey back to joy.
“We said, 'Just come home,'” says Connie. “We had three empty rooms from raising our own three kids; we had the room.”
Gratefully, Jon and Lindsay packed up their lives and moved in with Connie and Leonard, Ella's maternal grandparents. The move gave the couple both emotional and financial support; and four more helping hands provided important respite for mom and dad.
“Moving back to where my family lives made it a completely different world for us,” says Lindsay. “The stress on our marriage was that we didn't ever get away. Now we can say 'Hey, let's go get a cup of coffee' or just go to the grocery store. We can go together and get 30 minutes outside the house, alone, to talk about whatever is coming up.”
Raising a child with cystic fibrosis does, indeed, take a village. According to research, grandparents are of special significance in the network of support encompassing families living with CF2.
In fact, when grandparents lend a hand to families impacted by CF, whether it's providing childcare, offering emotional support, or giving financial assistance, they can create one of the world's best antidotes to the grief that is sometimes associated with a CF diagnosis – hope.
Grandparental support comes in all shapes and sizes, including offering advice, coping strategies and encouragement, becoming an advocate for the child's care with physicians, schools and insurance companies, or just making room for playtime. An afternoon with grandma means important “me” time for the stay-at-home parent.
“Not just anyone can watch her,” says 61-year-old Connie. “We know how to sterilize her equipment; we understand her medicine.” Connie smiles when she talks about what she and Lenny, 62, receive in return for opening their home to Ella and her parents.
“I love seeing Ella in the morning with her little bed head,” says grandma. “Yesterday she came down the stairs dressed as Mother Nature. Half the time when you see her, you have to ask, 'Who are you now?' She's just so delightful!”
Once Lindsay and Jon have saved enough money for a down payment on their own home, they'll be moving out and leaving behind an empty nest. Connie is hopeful that the couple will buy a house in the same neighborhood.
“I think I will be this involved in Ella's life forever.”
- 2 (Grandparents in the Lives of Grandchildren with Disabilities: Mothers' Perceptions; M.D. Baranowski, G. L. Schilmoeller; University of Maine; Education and Treatment of Children; 22/4; Nov. 1999).