A Childlike Spirit Is Essential to Cope With Hemophilia and Seizures

As parents with chronic illness, a columnist and her husband keep a sense of play

Alliah Czarielle avatar

by Alliah Czarielle |

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Parenthood has transformed my husband, Jared, and me in many ways. We’ve had to be responsible for a lot of things. We must look after our daughter, Cittie, as well as our home, our health, and our relationships with each other and other people.

When I was younger, I used to look up to my parents for being able to juggle lots of tasks and duties on their respective plates. I regarded them as a couple of serious, responsible people who attended to serious business.

Of course, my parents still managed to be playful when they were around me. I was still a kid, after all, and they needed to treat me like one. But when they were dealing with grown-up matters, their entire demeanor would change. Discussions about so-called adult concerns would be held in somber tones.

Now, I see Jared and I having to fill that set of shoes — but we do it with so much less seriousness than my adult role models used to show. In the early days of our marriage, we couldn’t help but wonder if we were going about “adulting” the wrong way. And with both of us managing our respective health diagnoses — Jared’s hemophilia B and seizure disorder, as well as my own attention-deficit/hyperactivity disorder and bipolar II disorder — shouldn’t we take things more seriously?

Not all the time.

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A typical day filled with jokes and laughter

Not a single day in our house goes by without Jared and I trading silly jokes and ironic statements or having the chance to tease each other in the name of pure, innocent fun.

And now that Cittie is nearly 4 years old, she’s starting to join in, too. In fact, she has her own unique brand of humor.

A child’s brand of humor

Cittie’s humor is surprisingly mature for her age. She also loves to make light of what most grown-ups might consider dark — including her dad’s chronic illnesses.

Once, she painted her whole hand with red watercolor paint and proclaimed she was making it look like Daddy “because Daddy is full of blood.” She seemed to be addressing the times she’s seen Jared with a visible bleed.

Another time, she lay a stuffed toy down on her bed and exclaimed, “He’s having a seizure! His brain is broken!” Clearly, she had picked up an inside joke that Jared and I have when we refer to his brain as temporarily broken when he gets an attack.

It’s as if she treats chronic illness as this normal thing in her life that doesn’t have to be tiptoed around. It’s a perspective we find refreshing.

And with chronic illness as a mainstay in our lives, we feel that it helps to be like a child occasionally — innocent, occasionally dark, but always honest and truthful.

The bright side of having a childlike mindset

One time, I was struggling to open one of Cittie’s egg toys. They’re plastic Easter eggs that open at the middle. And that time, the egg was closed tightly. I tried pulling the two halves apart and twisting them — to no avail.

I was about to apologize to her for not being able to do it, when she took the egg toy from me and started pelting it against the wall.

You throw it on the wall, it will be easy to open,” she declared in her confident child-speak. Lo and behold, she was right!

That incident got me thinking about the wondrous ways children’s minds work. Children are naturally divergent thinkers at that age, making it easy for them to see possibilities.

How wonderful it must be to adopt a childlike mindset and orient oneself to new perspectives!

When all doesn’t seem to be working out to a person with chronic illness, it’s great to discover new ways to see the world and other methods to solve stubborn problems. That’s what we try to do as we cope with our conditions. A childlike spirit helps!

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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