Life with a Chronically Ill Child (Guest Post)

Children don’t always come into the world perfect. My youngest of four children certainly didn’t. Nick was born with a horribly malformed heart. After a heart surgery at five days old, another at three months, another at one year old, he received a heart transplant just before turning two. Today, he is twenty one and attending college. Living with Nick’s chronic illness hasn’t always been easy. Though the years I’ve learned ways of cope during tough times.

Make the most of every day

Worry doesn’t add a minute to life. In fact, it takes minutes away that could be used to make precious memories. Don’t miss out on those memories by being stymied by worry. Live for today, not for what might happen down the road. Vacations are an excellent way to build shared memories.

Be united as a family

First and foremost be a family. Parents need to support each other, especially in front of the children. They feed off their parent’s actions and attitudes. Make sure each child knows they are important to making the family complete. Siblings should be shown they are just as important as the sick child. Share meals together as much as possible. That time builds family bonds.

Life shouldn’t revolve around the ill child

An ill child should be taught to mind, have chores, and be a functioning member of the family as much as they can be. It is important that siblings don’t become resentful. Standards of behavior should be the same for everyone. The whole family should support a child when they are participating in a sporting event, a program, band concert, etc. Attend the event in force whenever possible.

Understand that everyone handles stress differently

Recognize that not everyone in the family will react to a negative situation the same way. I talk a lot and fast when I’m scared. My husband paces and goes into his own world when he is worried. We have to respect each other’s method of coping.

Look for ways to have control

Volunteer, have a hobby, exercise. Do something positive for yourself every day. It takes a good sound body and mind to deal with an ill child. It is important for the caregiver to take care of his or her self.

A chronically ill child in the family adds special challenges to life, but they also add love and laugher. Nick has certainly brought that to our family.

By Susan May

Nick’s New Heart

www.susanCmay.com

Sanity Tips for Eating Out With the Kids

I’m afraid I can’t attribute their tastes to any exceptional quality of their attitudes or palates. I guess it’s simply a result of continued exposure to these foods and environments. According to Isobel Contento, a professor of nutrition education at Columbia University’s Teachers College in New York City, “Continued exposure to new foods is extremely important. Research suggests that children sometimes need to be exposed to food ten to fifteen times before they develop a liking to the food.”

Research by Contento and many of her colleagues supports my hunch: Any kid can learn to dine out and enjoy a broader range of foods, if given the chance. Unfortunately, resisting the temptation to feed kids only “kid food” ordered from “kid menus” at “kid-friendly” restaurants is no piece of Tastycake. But if you don’t, you wind up with kids whose narrow palates and general cluelessness about restaurant behavior are the self-fulfilling prophecies of Ronald, Wendy, and the Colonel.

I love going out to eat, but I don’t love anything that comes in a nugget or is served in molded plastic. My solution is this: While we do consume our share of burgers and pizza, our family also patronizes real restaurants. If you’re ready to try something a little more civilized and adventurous than another trip to KFC, here are a few tips to keep in mind.

Tasting Tips for Kids

The journey of a thousand meals begins with a single bite – or something like that. Here are some clues to guiding that first morsel safely into the hangar.

 
• Don’t make a huge deal out of the new food in question. Start simply – just let your kids see the grown-ups eating and enjoying it. 
• While you don’t want to flat-out lie, remember the old “tastes like chicken” ploy. You might say in your most casual tone, “Want a bite?” Then, when you’re asked what it is, say, “It’s like steak” (in other words, it’s venison). Or try, “Taste a bite and see if you can guess.” 
• Never eschew bribes: “A quarter for the first person who can guess what it is.” “Taste it and you can pick the dessert.” 
• If they absolutely hate it, do not make them eat it. If they’re not sure, you might suggest a second taste, perhaps with soy sauce, pepper, or lemon to personalize the flavor.

Rules for Restaurants

Want to get your kids through an eating-out experience without a meltdown? Here are a few guidelines to make it more fun for everyone.

 
• Do keep paper and crayons or pens in your purse at all times. This way, the gimmick of kid-friendly restaurants is yours anywhere. Older kids can play hangman and “dots.” 
• Don’t make a federal case about dressing up. Most restaurants these days don’t mind casual clothes, and by choosing one with a relaxed dress code, you’ll eliminate one area of dissent. 
• Don’t let kids have too much sugary soda before the food arrives. 
• Don’t let the waitperson serve meals to the kids first. If you do, the timing will get screwed up: They’ll lose patience before you’ve finished your main course. 
• Don’t bring other kids who have more limited palates than your own do. You don’t want to get an “ew” thing going. 
• Do allow a field trip or two to the bathroom or the lobby. Accompany your kids the first time to demonstrate acceptable behavior. 
• Don’t let your child order some expensive item she’s never had before without having her first try an appetizer or tasting portion.

Marion Winik is a writer and a commentator on NPR. Her latest book is The Lunch-Box Chronicles (Vintage).