When a child is diagnosed, the entire family is affected. While their parents shift into “survival mode,” it’s the siblings of kids with chronic illnesses that often get overlooked.
I remember the day that we learned of my daughter’s cancer. Even though we were surrounded by friends and family, I’ve never felt so alone. There was so much sympathy, yet no one really understood the journey ahead of us – not them and not us. And, as I sat there squeezing the hand of our helpless six-year-old, who was only partially comprehending what was happening to her, our toddler tugged at my dress and handed me a book to read to him.
Unaware of what I was doing, I picked him up and walked him over to grandma. At the time, it seemed like the only viable option. Our daughter was sick and she needed her mother. I couldn’t imagine missing one update from the doctor or not being there if she was hungry or in pain. All of my attention was on her because, in that particular moment, she seemed to need it the most.
Looking back now, I realize that our son was probably the one that needed me more. The fight to beat cancer was a family fight, not just my daughter’s. It affected us all. It’s obvious that our daughter’s life was about to change drastically but no one, not even me, stopped to really think about how it would affect her brother.
Without notice and in a blink of an eye, everything did change. Not only did bedtime stories fall on the lap of grandma but the lengthy hospital stay forced an early transition to bottle-feeding. And our days consisted of multiple doctor’s appointments and nurturing our sick child, while our baby played alone. He was only 1 at this time, so my guilt of neglect slightly fades as his memory shortens.
However, our daughter’s diagnosis affected and continues to affect, everything – even the way that I parent. Just about every fever, stomach ache, body pain, and cold symptom now requires a trip to urgent care. Our kids are with me and/or my husband at all times when they are not in school. The rationale is more subconscious and a bit overbearing, but we no longer send the kids to after school care. I guess it’s a heightened sense of protectiveness that I can’t exactly explain.
Our son doesn’t remember his sister’s treatments or the details of her diagnosis but it’s clear he remains affected. Now an 8-year-old and a middle child, he fights for attention. He keeps a tough exterior, but he’s sensitive and doesn’t like to be alone. When he feels sick, he expresses concern that it might be cancer too; he also asks if her cancer can come back and whether or not we can “catch” it. So, while he doesn’t remember everything, he understands (more than any third-grader should) how chronic illness affects the entire family.
Living in the land of online resources, siblings now have instant access to support. Here are a few that I love:
Sometimes, all the sibling really needs is to understand what’s happening and also reassurance that they are not alone. With older children, a simple google search might do the trick but younger children will benefit from illustrations and having words and phrases dictated in a way where it all makes sense.
Children’s Hospital of Orange County has a wonderful book resource list posted on their website. The first section offers a variety of selections for siblings of kids that are sick, hospitalized or who have disabilities. You can view descriptions of the books, as well as the suggested age range.
For additional books that address childhood chronic illness, check out this previous post by The UpBeat. Greg and I interviewed Erin Garcia, author of Tiger Livy. You’ll find information on this book as well as other great suggestions for kids impacted by chronic illnesses.
As a parent, I struggle with this one. Our schedules are chaotic enough with the extra doctor’s appointments and fear of the unknown. But, CoachArt, seriously saved us and continues to save us with their amazing one-on-one coaching and club activities. Any child between the ages of 5-18 that has been diagnosed with a physical chronic illness, and their siblings, qualify for these FREE programs. If your child wants to learn guitar, CoachArt provides the materials they need, and a background-checked volunteer instructor to teach lessons right in your home.
CoachArt currently provides programs in the Los Angeles, San Diego, and San Francisco Bay areas with more cities coming soon! CLICK HERE to become a CoachArt family today.
Also, check out these suggestions for sports programs for kids with special needs.
There are a variety of online and in-person support groups where siblings can meet other siblings. These are often diagnosis-specific and can likely be arranged with your child life specialist or by referral from your child’s doctor. For families affected by childhood cancer, Alex’s Lemonade Stand has a special place for siblings called SuperSibs. Age-specific, siblings will discover helpful tips, breathing exercises, coloring pages, infographics and even fun therapeutic activities such as creating a Hope Box.
Some Ronald McDonald House locations also offer sibling support in addition to their family and resident camps. All camps are available to qualified patients and their siblings. Learn more about the Ronald McDonald House.
This is probably one of the best ways for your child to connect with and meet other siblings. My daughter has met so many special friends through Ronald McDonald House and we know of other families that have used camps such as Camp Okizu and The Painted Turtle, from Serious Fun. Serious Fun Children’s Network, founded by Paul Newman, offers a variety of other camps for seriously ill children and their families.
For a list of more camps, check out this guide to fun activities for kids with special needs.
Know of other helpful resources for siblings of kids with chronic illnesses? Want to share your experiences or ask some questions? We’d love to hear from you … comment below!
The UpBeat podcast is powered by CoachArt, a nonprofit organization that provides FREE art and athletic activities to families impacted by any childhood chronic illness – such as arthritis, asthma, diabetes, cancer, cerebral palsy and more.
ABOUT THE AUTHOR
Roxanne is CoachArt’s marketing director, The UpBeat podcast co-host, and a mother to a childhood cancer survivor. Her vast experience in marketing, coupled with her real-life parenting journeys, brings a unique perspective to The UpBeat content. Roxanne majored in communications at Northeastern University and resides in Los Angeles with her husband and their 3 children.