Being sick isn’t easy, but neither is being the sibling of someone who’s sick.
We’ve shared many stories about children who are living with a serious illness. We’ve talked about their disease, what life is like for them, how they cope in such dire circumstances. But in all of these conversations, one thing we’ve overlooked is telling the stories of the brothers and sisters who sometimes feel that they live in the shadows.
Six-year-old Avery doesn’t have cystic fibrosis, but her sister does.
Avery is blessed with a healthy body, but 10-year-old Emily endures daily physical therapy, a strict diet and medication regimen, multiple surgeries and endless doctor’s appointments. And yet, as Avery sat across the breakfast table from her mother recently she said, “Mom, I sometimes wish that I had CF because Emily gets lots more attention.”
The truth behind Avery’s words is this: illness affects the whole family, not just the one who is sick. And even though Avery isn’t struggling through the physical challenges that Emily is, she still has to figure out who she is in light of the diagnosis that her sister carries.
Celebrate each child, individually
One of the most important ways that her parents, Brad and Kathryn, have helped Avery navigate this situation is celebrating the funny, easy-going kid that she is. Their faces light up as they tell about Avery hiding toy snakes in their bed to try and scare them. They laugh as she runs after the ball on the soccer field and they realize that she lost track of the ball because she was turned around making sure her parents were watching from the stands. They delight in her creative imagination and her love of animals big and small. They indulge her tomboyish interests in snakes, alligators, dinosaurs and tarantulas as much as her love of baby dolls.
They celebrate all the things that make Avery who she is.
Find a balance
Brad and Kathryn will be the first to admit that striking the right balance isn’t easy. Time, attention, and material things are all in limited supply, and it’s a daily struggle. They let Emily use her tablet to read or play games while she sits through her daily physical therapy sessions, but Avery wants tablet time, too. Emily has to earn her time by doing her physical therapy, so they require Avery to earn her time also, even if her tasks are different.
When Emily has surgery (and she’s had seven), she gets to pick out a new toy. Even though Avery doesn’t have surgery, she gets a new toy as well. However, they recognize the pitfalls that many parents fall into. Some parents might spoil the child with special needs because they feel bad for all of the difficult things the child has to go through. On the other hand, some may tend toward over-indulging the child without special needs because they feel guilty that the child isn’t getting as much attention.
The trouble with balance, though, is that parents are exhausted. Parenting is hard enough, but when your child has serious medical needs, the demands are even more. It’s easy to let your well child slide by with less parental involvement because they just don’t have the same intensity of need. However, Brad and Kathryn have learned over the years that it takes vigilance, an attempt every day to recognize and address the needs of each child. They may never get it exactly right, but they keep trying.
Make quality time a priority
One of Avery’s biggest struggles with her sister’s illness is that she feels left out of the quality one-on-one time with Mom and Dad. At six years old, Avery doesn’t understand that much of Emily’s “one-on-one” time is happening in the doctor’s office. It’s an area where she feels shortchanged. Brad and Kathryn have heard her voice these complaints, and they try to accommodate her need as much as possible. If Mommy and Emily are “going on a date” to a doctor’s appointment, then they try to schedule time for Daddy and Avery to have special time together, too. Or Kathryn might plan a special time for her and Avery later in the week. As a family, quality time with each child is prioritized so that each of them knows that they are important and valued just the way they are.
Open up the dialog
Every family has unique challenges, and navigating the troubled waters of illness isn’t easy. We all need to look at where we are once in awhile and correct our course a little bit. The way we do that is by listening to our kids. Open up the dialog. Let your children know that it’s okay to voice their needs, their desires, even their complaints.
When Avery voices her concerns about Emily getting more attention, it’s an opportunity for Kathryn to share her own understanding of Emily’s illness:
“We don’t know why we’re in the situation we’re in, why someone has a disease or someone doesn’t. Only God knows that. If you’re looking around at everyone else, you will always see someone who has it better than you. But, you’ll also see someone who has it worse. You’ll always find things you can be thankful for.”
Having a sibling with special needs presents special challenges for kids like Avery, but it’s a challenge that the whole family faces together. What all kids need are parents who are committed to doing the best they can for each of their children, no matter how special or how ordinary their needs may be.
And both Emily and Avery certainly can be thankful for that.
Courtney Schmidt is medical communications editor, Arnold Palmer Hospital for Children, Orlando, FL. She blogs at Illuminate.