By Melissa Riddle Chalos

When you’re caring for a chronically ill child, there are so many layers of stress, some days feel as if you’re being pulled down by a current in an ocean of impossible.

For a moment, it might seem a gift to let the current take you. But then your inner mama or papa bear claws its way up through the swell. There’s no time to give in. Too much is at stake. And there you are, awash in the bewildering, new “normal” of your child’s diagnosis, treatment, prognosis and everything that comes with it.

Only through experience do you learn the cadence of hurry-up-and-wait for the breakthrough that may never come. Even at home, where everything is disrupted and out of sync, you will learn what it takes to achieve a new rhythm.

How Illness Shapes a Family

When your child has a chronic illness, “[it] changes family members’ roles, responsibilities and boundaries,” writes University of Iowa psychology professor Dr. Erika Lawrence. “It disrupts their self-images and self-esteem. It results in uncertain and unpredictable futures.”1 The illness of one child is all-encompassing, and it affects the entire family.

For moms, it’s emotionally and physically devastating. Not only are you pulled in more directions — back and forth to doctors, hospitals, therapists, social workers — there is also the constant, nagging guilt that it was somehow within your control to prevent the child’s illness, followed by guilt over how this child’s illness will impact your other children. The exhausting, mask-inducing need to try to explain to friends and family how everything is good even though it’s not. Your laser focus on the sick child can alienate your other children and prevent you from caring for yourself.

Dads are often affected in other ways. “Men are raised to fix things and to make everything better,” says Julie Gordon, mom to Jessica, an adult daughter who functions at a preschool level. “It’s emasculating and frustrating for them to watch their wife and child in pain and they can’t do anything.”2 Financial strain of illness can be particularly crippling for men.

The chronic illness of a child often shifts the marriage of the parents into crisis mode. You lose time alone as a couple, which makes it even more difficult to communicate openly about what’s happening. For some, feelings of helplessness or resentment drives a wedge between. For others, crisis mode inspires couples to lean in and draw strength from each other. The impact depends, according to research, on the type and severity of the illness, as well as the health of the relationship before diagnosis.1

For sisters and brothers, the chronic illness of a sibling can have a dramatic impact on their world. They can experience insecurity and uncertainty about their family and its future, as well as anxiety and worry, which can lead to lack of sleep. They may be embarrassed about the lack of normalcy in their family or disappointed about special treatment the ill child receives. And it can be hard for them to express and cope with these confusing emotions.

Every family member tends to create their own coping façade, downplaying the reality of the ongoing stress in the home. That’s why it’s essential to build a plan of survival and coping strategies. These may include:

  • Integrating the illness into the family’s daily routine: a coordinated, cooperative approach to help deal with the demands of the illness and its treatment.
  • Taking care of everyone’s physical and psychological health: learning relaxation techniques, exercising regularly, and having time to get out and have fun.
  • Creating a “new normal” that moves the family out of crisis mode, which helps everyone better understand and find meaning in the everyday challenges.
  • Getting therapeutic support early on, when healthy communication isn’t possible or someone in the family is struggling with anxiety, withdrawal, etc.1

Building Support Systems

It’s also crucial for families with chronically ill children to build a network of support that is ongoing and practical. This begins at home, with clear and honest communication — at appropriate age levels — about what kind of support each family member needs.

Ask what would make everyone feel listened to and supported. What do the children who are not sick need to hear from their parents? Lack of communication is a key factor in producing feelings of insecurity in children. What do women need from their husbands? People tend to show support in the way they’d want to be supported. Talk openly, share feelings and ask what the other needs to feel supported. Active, engaged listening can remove mountains of anxiety.

Outside the family unit, most people want to help in some way. We all need others to come alongside and handle things we can’t manage in times of crisis. But they can’t help if they don’t know what would be helpful. When people sincerely ask, “What do you need?,” give them an answer.

If you don’t have extended family or good friends nearby, reach out to people who know what you’re going through. For almost every type of childhood illness, there are communities of support with parents experiencing the same thing. Your child’s doctor can put you in touch with these support systems. They can help you in your new role as an advocate for your child, breaking the stigma of illness and feelings of aloneness, and sharing advice and experience that will make caring for your child and your family more manageable.3

“It was real scary in the beginning for me,” says Jayne Mondello, who got involved with the deaf community because her daughter is nearly deaf. “I was afraid. It was like facing my fears to see what my daughter’s life would become. But now I’m glad I did it. It helped me break through my own fears.”2

You Live, You Love, You Learn

“Keep your eyes on the prize,” the old folk song says. But when the prize never comes, or worse, you’re set up for the biggest loss a parent can face, the objective becomes simply getting through each moment. But beautiful things can emerge from even the most trying times.

“I think to survive you take one day at a time,” mom Julie Gordon adds. “Otherwise it becomes too overwhelming. I think you just get more used to it. You get more accepting. You take more joy in your child’s accomplishments. You stop comparing to other people’s children. You start appreciating their uniqueness and their special qualities and then you see how it has made you a better person.”2

Living with a chronically ill child makes it possible to cut out all the superfluous noise and focus on what matters. You begin to understand the difference between what’s essential and what’s not.

You learn the importance of that morning kiss, that encouraging word. You understand the importance of listening before you speak, of creating calm to carry your family through the ocean’s chaos. You learn to move from hour to hour, not just chasing a schedule, but with great intention, looking for moments of light and laughter. You learn to take nothing for granted and realize you’re stronger and more capable than you ever thought you could be.

A Place of Calm for Your Family

If your family needs help finding the calm in the ocean of chronic illness, Cumberland Hospital offers a safe, nurturing, healing environment in which children can begin to flourish. Call today for more information.

Sources:
1 Lawrence, Erika. “The Impact of Chronic Illness on the Family.” IG Living, June-July 2012.

2 Epstein, Randi Hutter. “Love, Anger and Guilt: Coping With a Child’s Chronic Illness.” New York Times. June 26, 2001.

3 La Clare, Heather L. The Impact of Childhood Chronic Illness on the Family: Psychosocial Adjustment of Siblings. Master of Social Work Clinical Research Papers, 2013.