Ten years ago, when Jessica Plunkett was 10 years old, a diagnosis of type 1 diabetes changed her life forever.
But it wasn't Jessica who was diagnosed -- it was her brother, Daniel, then 7 years old. Still, the changes within the family, both large and small, affected Jess (as her family calls her) almost as much.
"It's amazing how much the disease completely changed my life in every way. It was the little things that bothered me the most. Danny was read a story first every night because of his testing schedule. At every restaurant meal, we stopped having bread delivered to the table -- but I still wanted bread!" she says.
From compromising at meals to facing the fear of a brother or sister being hurt by a deadly disease, the siblings of a child with type 1 diabetes face special circumstances. Recognizing and tending to their related needs are key to their well-being, as well as the health of the family as a whole.
As Kim Higgins, a registered nurse and certified diabetes educator with the Sutter Pacific Medical Foundation in San Francisco, points out, diabetes is a family disease. "It's very important to have the family on board with diabetes care," she says, "but it's also important to incorporate management without taking away from the other child."
Here are some tips that can help:
A family effort
Getting siblings involved in diabetes care meetings and gatherings like family diabetes camps as early as possible can help foster a feeling of togetherness that benefits all, Higgins says.
"Sibling relationships are the closest relationships a child will ever have. Friends come and go, but brothers and sisters are for life. It's important to involve siblings in any major event, and certainly having diabetes is a major event," she says.
Teaching siblings about the disease may also help them cope with their fears. And while they should not be responsible for treatment, let them know their input is welcome, she suggests.
"We gave Jess paper and a pen during meetings with the care team to soothe and include her, so that she felt involved and important to the process," says her mother, Laura Plunkett, author of a parenting book for families of children with diabetes. "Jess piped up with questions and wrote down the answers. To our surprise, in those first weeks, she often interrupted our adult conversations with really good suggestions and tips from the training sessions," Plunkett says.
"Most important, because Jess felt included and part of the team, she didn't resent the time and attention that Dan was getting. She understood the gravity of the situation, and that we all needed to be looking out for him," she says.
For her part, "I felt that I had contributed, and obviously my parents were very grateful, so it empowered me," Jess says.
Based on her experience, Jess says parents can try to encourage talking about feelings often, as hers did, to see how siblings are faring and nip potential problems in the bud.
"Remember the little things, like saying, 'Thank you,' or 'I love you,'" she suggests. "And just say, 'How are you feeling about the diabetes? Is there any way we can make this easier on you? Because we know it's hard on the whole family.'"
Make one-on-one time
While caring for a child with type 1 diabetes may take the lion's share of a parent's attention, particularly right after diagnosis, it's important to carve out special time for each child, Higgins says.
"My mom would take me away on vacation for a night or two so that we could be alone. Sometimes my dad would take me out for ice cream in the evening," Jess says.
"It's important for siblings to feel equal, that they're both loved unconditionally. For each child to have their own successes in life, we need to make sure as parents and as healthcare providers to really praise both the child and their siblings for any accomplishments," Higgins says.
In time, siblings may even come to realize that a brother's or sister's diabetes has had some positive effect on their own life.
"It definitely influenced my life in a wonderful way, because I am so much more aware of what to eat and how to take care of my health," Jess says.
The disease has also made her much closer to her brother than she might have been otherwise, she says. "We spend a lot more time together. We're best friends."
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the "typical" experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.