Alesia Shute is a childhood cancer survivor from the age of 7, and is the author of Everything’s Okay (www.everythingsokaybook.com) the founder of The Alesia Shute Foundation, whose mission is to improve the lives of families facing childhood disease, both by making hospital stays morecomfortable and by funding research that will treat or eliminate childhoodillnesses.
Getting Stronger by Leaning
By Alesia Shute
When I was seven years old, I was diagnosed with cancer, and spent my childhood in treatment and recovering from surgeries. Now, fortunately, as a healthy adult, I am able to work with families whose children also battling the disease. I wrote my memoir, "Everything's Okay," detailing my illness and recovery, in hopes that others would find inspiration and hope.
Parents of kids who are chronically ill are unbelievably stressed. Not only are they worried about the health of their child, but parents also must cope with mounting medical bills, performing adequately in their jobs and maintaining a sense of normalcy for any other kids.
Too often, these parents try to be too strong. They try to handle everything on their own, when in reality, calling in reinforcements on occasion can ultimately make your family stronger in the long run.
· Focus on the whole family, not just on the sick child. Although the parental instinct is to spend all of your time with your sick child, it is important for everyone that you spend quality time with your other children. Instead of always asking a neighbor or relative to watch your healthy child while you stay at the hospital, switch it up, and ask someone to stay at the hospital while you take your healthy child out for ice cream, or spend time going over homework.
· Carve out couple time. Date night when you have a sick child? Ironically, yes. Whether it's sharing a glass of wine while watching a DVD, or taking a walk around the block, spending time as husband and wife instead of always seeing yourself and each other as the parents of a sick child is essential for maintaining your marriage.
· Say yes to help. Friends will want to help, and we're often too independent or to be honest, too frazzled, to accept it. But you're consumed with the whole sick thing, and that’s your focus, and you're exhausted at the end of the day, so why not let people help you? They will probably need you at some point in the future, so it works both ways. Let them make meals for your family (so you can spend time cuddling your little one, or having that wine with your spouse). Scribble a list on the fridge of things you just can't get to, i.e. laundry, vacuuming, dry cleaning drop off or pickup, lawn care, and when someone says, "let me know what I can do," tell them!
When a family member is chronically ill, we're understandably in crisis mode. But we really can't maintain any quality of life when we're in a constant state of emergency, which may last months or years. As hard as it may seem, incorporating as much normalcy into your daily lives as possible and strategically leaning on your supporters, will give you strength for the long-term battle.