Parent to Parent: Helping Families with a Critically Ill Child

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As we wave goodbye to September, we also wave goodbye to the “go gold” ribbon month of Childhood Cancer Awareness. Did you know that in the month of September alone, approximately 14,600 children worldwide were diagnosed with cancer? (St. Baldrick’s Foundation) That’s about 486 kids per day… and 486 families whose lives will never be the same. I know that ours hasn’t.

Serious childhood diseases are devastating, and they do not discriminate. We know that children get sick every day of every month from cancer and many other debilitating diseases. The family of a critically ill child may pull back, isolating themselves physically and socially, but there are ways that family and friends can show support. What if that child is your own? How can you ask for help?

Practical advice for helping friends when their child is critically ill.

As a parent of a childhood cancer survivor, what I’d like to say is that friends and family will be supportive and understanding. That might be the case, but not always. No one can truly understand what it’s like to be in the whirlwind of a childhood disease. It’s living, intensified, and not everyone understands or sometimes cares to. Here are a few hard-earned, parent-to-parent tips:

Not everyone will understand, nor should you expect them to. Your friends will continue to have lives that revolve around politics, work squabbles, half-yearly sales, and soccer tournaments. Your friends might post trivial things to Facebook or Instagram at the exact moment you feel your life is caving in. No one can truly understand the journey unless he or she has set foot on the path, so be gentle with people. I wouldn’t wish parenting a child with a serious illness on my worst enemy.

Set limits. Think hard about the people you let into the sacred space of your life. Limit time with friends who attract drama or crisis of their own. The same goes for those who swim in an ocean of negativity. This is a hard thing to do. I know because I’ve been there. In survival and recovery modes, try to surround yourself and your family with kind, compassionate, unassuming people. That’s a tall order, but one you will appreciate later. Be attentive to your child’s needs. Even a room full of kind, compassionate, unassuming helpers can be too much at times. Be a champion for your child. Sometimes that means limiting visitors. Ask your child if he or she wants visitors before inviting. Likewise, parents can become overwhelmed. Take a social break if you need it. Or take a mental break. Ask your loved ones to call before visiting to see if it’s a good time or not. People shouldn’t just drop by unannounced. If they do, have a loving conversation: “You know we love to see you, Aunt Phyllis. We want to make sure your visits are special. Please give a call next time so that we can pick a time that’s best for you and for Timmy.” Make sure to let friends and family know that sometimes it’s a day-to-day thing. Kids can unexpectedly spike a fever or suddenly feel ill. Ask loved ones for their patience. Put scheduled visits on a master calendar.

If you need it, ask for help. Generally speaking, people want to help and aren’t sure how. Speak up if someone asks what they can do for you and you can think of something specific. It might be picking up a sibling from school or bringing a hot meal or coming by the hospital to watch your child so you can take a shower. You might consider asking someone to help you build a CaringBridge site or a Facebook page. Post any needs or “wish list” items. Here are some ideas:

  • Gift cards: Starbucks, Subway, Amazon, gas, supermarket
  • Gift card to a nearby restaurant that delivers
  • Hot meals
  • Babysitting for siblings (for a parent date night or a “short break” respite)
  • Small household tasks: a load of laundry, dishes, shopping, taking out the trash
  • Help with the yard: mowing, edging, weeding, watering
  • Caring for pets: walking the family dog, feeding and watering
  • Movies: funny or upbeat titles
  • Books (for the child and parent): age appropriate and interest-based
  • Puzzles, games, coloring books and crayons

Drop expectations, appreciate what comes. Like many things, this might be easier said than done. However, letting go of expectations will save you grief in the end. We get into trouble when we expect people to act a certain way or to do a certain something. It’s a better plan to expect the unexpected and appreciate what does come your way. You have little control over what others do or do not do. We can’t control others, but we can control our response to what happens (or what doesn’t). Take on an attitude of gratitude and assume the best of people. Assume that people are doing the best they can with what they have. Assume that people would come to visit if they could.

Know early that you may lose friends. To be blunt: some folks don’t know how to handle sickness or grief, so they disappear. It happens. These friends and family members may come back when things settle down, and when that happens, you can decide if their love and/or friendship is still of value to you.

You will also gain new friends, if you are open to the experience. If you are having trouble connecting, look into a parents’ group that either meets in-person or online. One of my greatest joys was becoming a part of online support communities. You might also meet parents from your child’s doctor or specialist, at the hospital, or from living in a facility like the Ronald McDonald House. Exchange information, get the digits of your new pals, reach out to them, and keep it positive. Parents and their children can support one another!

Be respectful. In a perfect world we wouldn’t need a reminder, but parenting a child with a serious illness is far from a perfect world. Do your best to extend basic courtesy to others. If you must, walk away. Count to ten or twenty or one hundred and twenty. I found it helpful to keep a gratitude journal, a small thing I could keep in my purse to jot down notes about things that made me or my child happy. Looking back, we gave thanks for some funny things. I still smile today thinking about quality toilet paper and the first flowers of spring. Extend your gratitude outward and others will feel it.

Parenting a sick ill child is challenging. We can feel isolated and alone at the very time we need kindness and connection. Whether you are the parent of a sick child or want to support a family in need, the very best thing you can do is to keep an open heart. Ask for help if you need it and offer help to others if you are able. ♥

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