Practicing Gentle Parenting Amid the Frustrations of Chronic Illness

How this couple remains calm while raising their young daughter

Alliah Czarielle avatar

by Alliah Czarielle |

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My husband, Jared, and I are in an interesting stage of our parenting journey. Our daughter, who is almost 4, will be going to preschool soon, but for now, she spends almost every day with us at home.

She has a rather introverted temperament, so most of the time she keeps to herself and does her own thing. Our home is much quieter these days compared with the turbulent toddler years. We’re thankful this is the case because it lets us carry on with work and household chores without interruptions for longer stretches of time.

But the preschool years come with a new set of challenges, especially when she tries to assert her preferences or express disappointment. At her current age, she doesn’t deal with frustrations too well just yet. She’s unlikely to do so until late adolescence.

Self-regulation, after all, is a skill that takes years to develop. Even adults struggle with it until their brains are physiologically mature.

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How Disability Influences the Way We Parent

Jared and I follow a gentle parenting approach to address our daughter’s emotional struggles. By definition, gentle parenting is centered on empathy and reflection. Gentle parents acknowledge their child’s humanity and validate their child’s feelings. They avoid shaming their child for behavior typically regarded as “bad.” Instead, they get to the root of the behavior and help the child respond in acceptable ways.

As much as we want to be gentle parents all the time, it isn’t always possible. We do slip at times, especially when Jared’s health is less than optimal. Living with hemophilia can sometimes feel like an emotional roller coaster ride, especially when bleeds cause Jared pain. His seizure disorder has its ups and downs as well. On some days, he’s essentially normal, but on others, a sudden seizure could interrupt important plans.

Chronic illness is emotionally taxing — especially when physical pain enters the picture. Research has shown that chronic pain can limit a person’s emotional scope, lowering their ability to process complex emotions. As a result, they may withdraw emotionally or regress to an earlier life stage. When this happens, the person may react negatively to triggers in quick and uncontrolled ways.

Calm parents = calm children

Children are like sponges, constantly absorbing input from their environment. They learn from their surroundings, modeling their behavior after the adults around them.

When adults respond to daily frustrations in a manner that is anything but calm, children pick up the idea that complaining or lashing out is an acceptable response to life’s difficulties. And if stressed-out adults often behave angrily or violently around their children, these children might eventually learn that unloading negative emotions onto other people is OK.

Frustrations are hard to avoid in a life where chronic illness is a mainstay. Thankfully, we’ve picked up some strategies that help us practice gentle parenting effectively, even amid frustrations.

Radical acceptance. There’s no cure for Jared’s hemophilia, a truth we must constantly face. Every day presents the possibility of a bleed, but this isn’t a reason not to fulfill our responsibilities.

Theoretically, medication can control seizures, but Jared still hasn’t reached that point. Instead of being angry about it, which can trigger even more seizures, it’s better for us to carry on with our lives while keeping Jared’s limitations in mind.

We must learn to set our expectations and think about the big picture. That way, we can refrain from doing things that will only make conditions worse in the long run. Parenting-wise, this means learning to accept that we aren’t perfect — and neither is our kid.

Letting go of expectations. It’s important that we let go of expectations and learn to meet our child where she is. In the same way that we expect bleeds and seizures to come along now and then, we must anticipate that our daughter will behave like a child at her present age. She’ll have outbursts, complain, and behave badly sometimes — and that’s OK.

We can help her deal with her feelings while learning to regulate ourselves amid our own frustrations. There’s solace in the thought that unlike hemophilia, childhood isn’t forever.

Putting the weight down. Sometimes life is just too much, and it’s hard to do anything at all — let alone do it well. It’s OK to be “bad” parents sometimes, recognize our mistakes, and try to be better moving forward. It’s OK to accept help when it’s on the table. It’s OK to let go and get some rest.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.


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