What You Need to Know About Parenting with a Serious Illness

For any parent, there are challenges and hurdles along the road to raising a child, and adding a serious illness to the mix can be overwhelming. However, there are many ways to minimize this burden on yourself, provide your child a fulfilling life, and still make time to be present for them.

Acceptance is the First Step

All patients who receive a life changing diagnosis need time to process the news, and your children are no different. Children of all ages will not only digest this information differently, but will also need varied kinds of explanations. Considering how this information will affect your child is also very important.

Teenagers have more autonomy and require less 24/7 care, but will also need to understand that a diagnosis doesn’t mean an absence of rules or attention to their problems. At younger ages, the choice of how much information to actually share comes into play. Judging how much you think your child can comprehend and handle is an important first step here.

Additionally, choosing who tells your child the information is essential. Your options could include telling your child yourself, with your spouse, having your spouse do it alone, or having another close family member or friend discuss it. Whatever works for your family is the right decision.

How To Answer Their Questions

While you go through treatment, your energy levels will fluctuate and may lead to mood swings and changes in disposition. Additionally, some treatment plans may be experimental or require adjustment along the way. Any and all of these changes will lead to a lot of questions from your child.

Questions like, “when will you get better,” “why is this happening,” and “can I help,” are common examples of things your child may ask. Preparing yourself for these will help you both feel more stable in the situation.

Though your first instinct may be to protect your child from worrying about you, the honest truth is often the better route. Being honest about what you do and don’t know about your situation will make your child feel included in the situation. Children will prefer to know what is going on than to be coddled and left in the dark.

This can also be an opportunity to build healthy coping mechanisms with your child. Sharing what helps you and the rest of your family get through this difficult time can provide your child with tools to do the same for themselves.

Some families may choose to find comfort in faith and worship, while others may turn to activism or involvement to find solace. The vital thing is to find something that works for you to avoid feeling directionless. Being occupied and focused will reflect well on your child too, and give them less to worry about.

Learn to Ask For Help

It comes naturally for parents to put their children first, but in this instance it is equally as important to make sure you process the news on your own as well. Refusal to address your own emotions about your diagnosis could lead to mental health issues and coping difficulties, which may affect your recovery and family.

For Heather Von St. James, a mesothelioma cancer survivor, learning to ask for help was vital to being present in her daughter’s life while simultaneously recovering.

“I don’t remember much of the first two years of my daughter’s life while I was in treatment and recovering,” Von St. James said. “What I do remember is asking for help. I had so many people offer to help with Lily, and I did not hesitate to take them up on it and ask people to help out.”

More than just accepting help with Lily, Von St. James realized that receiving help in other ways was even more beneficial, and left more time to spend with Lily. Prioritizing what you can accomplish with limited energy levels during treatment is important, and often difficult.

“I had no energy to do things like clean or do yard work, so prioritizing things was important. Having energy for Lily was number one, and I let others help with the other stuff,” Von St. James said.

Knowing where to turn for help can be difficult, but there are many options. Depending on your family dynamic and makeup, familial help may or may not be a viable option. Other alternatives can be friends, disease support groups, and service organizations.

Disease support groups can be an especially valuable asset for you, as a way to freely discuss the challenges you’re facing and get advice from others in the same situation. Also, take the time to familiarize yourself with community activities and services in your neighborhood that can occupy your child, or provide you with extra help in daily tasks.

A Teaching Experience for Both of You

Though a chronic illness diagnosis is never the teaching experience one wishes for, it can still be a valuable one. For Heather Von St. James, it was a lesson in how to be the best mother for Lily. Beyond a tutorial in prioritization, it also taught her to be more unflappable in difficult times.

“Cancer taught me to not sweat the small stuff in parenting and, in doing so, it has rubbed off on my child,” Von St. James said. “She takes things in stride and is much more laid back about things.”

For children too, a parental illness is a life-changing experience that can become an experience to grow from. Empathy, hope, and strength can all be learned behaviors instilled during times of hardship that will last a lifetime.

“We live in the moment,” said Von St. James. “We don’t dwell on what we can’t change, and don’t stress over the future.”

Children’s minds are growing and expanding every moment, so instilling positive thinking patterns and coping mechanisms at an early age is a precious lesson. Some studies have proven that children of parents with chronic illness show “academic resilience,” which indicates a sort of tenacity and perseverance.

Though these studies show positive outcomes like academic resilience, they can also show lower performance and behavioral problems just as often. This demonstrates the importance of attention to your child during your illness, and the drastic changes it can have on their lives.

“Simply being there as a parent means more to my child than any gift or material thing,” Von St. James said. “What she remembers are the times when I was present and just with her, driving in the car with a plastic skeleton from Target, carving pumpkins. The traditions we’ve made as a family are what matter, not gifts or big vacations. Being present is what matters.”

Key Takeaways

  • Don’t neglect yourself and your treatment; your mental health and well being are just as important as your physical treatment.
  • Make time for your other important relationships (your parents, other family and friends), balance is important and will help you get through your diseases.
  • Remember to ask for help.
  • Instill positive values in your child, as a response to hardship.

A team specializing in cancer awareness and advocacy from the Mesothelioma Cancer Alliance co-wrote this article. This team was headed by Emily Walsh, who specializes in promoting the spread of valuable information to assist cancer survivors, and their friends and family, with necessary support.