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Parenting a Chronically Ill Child

Raising a child with an ongoing illness can pose many challenges for couples, and the family as a whole. Learning to navigate these challenges in a productive manner is essential for maintaining stability within the family unit, not just with the affected child. Parenting under these circumstances can negatively impact couple relations, the relationships they have with their other children, and the health and well-being of the parents themselves. Here are some guidelines to help face these challenges and ease the fear and anxiety that comes with raising a child with a chronic condition.

Honest Communication

In order for a child to understand what is happening, it’s important to be upfront and honest about their condition and concerns. Providing clear and honest answers to all your child’s questions, in a way they can understand, is crucial to helping them deal with their fear and anxiety. As parents, we want to ease our children’s fear, and may be tempted to say something like “this won’t hurt”, when in fact getting a shot may cause discomfort or pain. Instead, try to reassure your child that it’s only temporary and that you are there to support and comfort them. In the case of an upcoming surgery, it’s important to accurately explain to your child what to expect, as well as prepare them for future treatments.

Challenging Emotions

No doubt, your child will have many feelings associated with what is going on with their bodies, and should be encouraged to express those feelings. It’s important to create a space for their concerns, and reassure your child that what is happening to them is not their fault. If your child expresses to you “why me” or “it’s not fair”, acknowledge their feelings and allow them to express their anger. It’s also important to reassure siblings that nothing they did caused the situation and acknowledge their fears and concerns as well.

Creating a New Normal

Children thrive on structure, even during a chronic illness, and that includes keeping their lives as normal as possible. Children do not want to be defined by their illness so it’s important to maintain as many of your child’s previous activities as possible. Whether it’s the time you eat dinner or communication with their peers, it’s crucial to maintain some of your old normal in order to adapt to the new. Above all else, it’s vitally important that kids feel loved, supported, and cared for by the entire family, in spite of their illness.

Self Care

Caring for a child with a chronic illness presents enormous challenges that are draining on your health and well-being. Just like putting on your oxygen mask before your child’s, it’s important to take care of your own needs in order to be fully present for your child. Whether it’s taking a walk, a bubble bath, or even getting a massage, self-care is vital in navigating the overwhelming challenges faced by caregivers. Other coping skills include educating yourself about your child’s illness, reaching out to friends and family, and finding a support group. Since no two people grieve the same way, don’t hesitate to reach out for professional counseling to help make sense of what you’re going through.


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