How Disability Influences the Way We Parent

Alliah Czarielle avatar

by Alliah Czarielle |

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When I was a child, I learned a song called “Greatest Love of All.” I’ve always found the first two lines particularly striking: “I believe the children are our future/ Teach them well and let them lead the way.”

Now that I am a mom to my very own spunky little girl, Cittie, this statement rings even more true. As my daughter gets older and her character begins to develop, I realize even more how important it is to give our child appropriate guidance to help her navigate every life stage with confidence and compassion for self and others.

I also realize how important it is for a parent to be fully present for their child, and to be emotionally attuned to the child so they can connect on a deep and authentic level.

Connection before correction” is a well-known phrase in the parenting world. Only when there is a heartfelt connection between a parent and their child does the child become receptive to the parent’s teaching. Lecturing and nagging never go straight to the heart. (In elementary school, I would roll my eyes at teachers who prattled endlessly but never talked to us for a minute or practiced what they preached.) But meeting another person where they are, trying to understand their point of view and their struggles, and offering genuine support makes a difference.

I’ve been able to practice this in my interactions with my husband, Jared. I can see how emotionally connecting with him and trying to see things from his perspective have helped our relationship progress. We are from two very different worlds: He has chronic illnesses (hemophilia and a seizure disorder), while I am relatively healthy, although I do struggle with anxiety and depression.

Both of our conditions can make daily life a struggle, so we must be transparent and objective with each other in order to get by. We must be honest about what we can or can’t do, and compromise if one of us is lacking in some capacity. This way, we can effectively support each other.

Even if my daughter is not chronically ill, we have different life experiences. We are a generation apart, which means that she will be influenced by different things. There will always be a gap between us, and as the older, more experienced person, I am responsible for filling that gap and reaching out to her. I can achieve this through intentional parenting strategies, which Jared and I both strive to put into practice.

Intentional parenting is all about choices. An intentional parent knows that time and energy are limited resources. With that in mind, the intentional parent makes a priority list of where their time and energy go, and they let this priority list guide their day-to-day decisions.

My husband and I are very much aware of the spoon theory, a metaphor that describes how much energy a chronically ill person has available for daily activities. Healthy people have nearly unlimited “spoons” to spend, but for chronically ill people, their illness determines the number of spoons they have. Once these spoons are spent, the person is done for the day.

Likewise, in our parenting journey, we are made aware that time is a finite resource. The days are long, but the years are short. There is only a brief window of time when a child’s mind expands rapidly, allowing them to soak up knowledge like a sponge. Once this window has passed, the child will no longer learn as quickly.

Thus, a parent must decide between pursuing a life that satisfies their own desires, or putting these desires aside and spending what few spoons they might have on their child. Often, it is impossible to do both at the same time.

Much of my attention goes to Cittie these days, as the experiences she’ll have at her current age are crucial to her “becoming.” Jared and I both want to spend most of our spoons being present for her right now, equipping her with the skills she needs to become independent. In time, she won’t need us as much anymore. And by then, I can pursue the things we want for ourselves.


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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