How Our Daughter Copes With Hemophilia in the Family

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by Alliah Czarielle |

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My daughter, Cittie, is now 3 and a half years old. She’s grown so much over the past years, from a tiny and helpless little baby to a more independent preschooler with a mind of her own. She’s gotten good at expressing what she likes and dislikes. She’s also quite creative! Not a day goes by without her making up lyrics to songs, telling jokes, or finding new ways to explore and play.

Lately, she’s also been asking lots of questions about things around her. Once, when my husband, Jared, had a bleed, he brought a dining room chair to the bathroom so he could bathe himself while seated. Cittie saw this and asked her daddy, “Why is there a chair in the bathroom?”

With a dad who has hemophilia and a seizure disorder and a mom who has attention-deficit/hyperactivity disorder and bipolar II disorder, she certainly has a unique set of parents. She’ll have some unique experiences while growing up in our home!

Like most kids her age, Cittie enjoys pretend play. She especially likes to play doctor and patient. She has not one, but two doctor sets, packed to the brim with toy medical instruments. Now and then, she’ll place her toy syringe on our arms or hands and pretend to administer medicine. Then, with a huge smile on her face, she’ll exclaim, “All better now!”

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Most kids might’ve learned about injections from games, television cartoons, or the occasional visit to the pediatrician. But Cittie learned about them at home, having seen her dad infuse himself with clotting factor countless times.

Whenever Jared needs to infuse, she often asks to watch. She’ll climb onto a piece of furniture and keenly observe while he jabs a needle into his veins. Once the needle is in, she’ll carefully watch out for the flow of blood. Then she’ll burst into giggles as her dad lifts and pushes the plunger ever so slightly — making the red streak bigger, then smaller, bigger, then smaller again.

Unsurprisingly, Cittie isn’t scared of injections at all. The last time she had a flu shot, she simply sat still and watched the needle slide beneath her skin — and then proceeded to play like nothing happened.

Whenever someone in the family is sick or hurt, Cittie is quick to respond. She can somehow sense when another person is unwell. She quickly asks if they’re OK, offers medicine, and tries to comfort them in the best way she can — through hugs and snuggles.

At her age, we need to be transparent with her about any health challenges we might be going through. We don’t want to leave her clueless about why she can’t roughhouse with Daddy on certain days. Or why Mommy might be extra busy looking after Daddy while working at the same time.

But Cittie demonstrates an uncanny maturity in understanding our circumstances. Sometimes, she’ll notice that Jared is injured and take it upon herself to ask, “Daddy, are you sick?”

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Cittie puts a bandage on the “ouchie” of her daddy, Jared. (Photo by Alliah Czarielle)

Then, Jared explains to her that she needs to be careful around him so as not to aggravate his injury. He tells me it always breaks his heart to do so, because he feels like he’s denying her fun and joy. Yet Cittie always seems to take this with grace. She’s so considerate of him whenever he is injured! She doesn’t play rough around him as much — and even though “daddy snuggles” are her absolute favorite way to fall asleep, she doesn’t squeeze him too much when he has a bleed.

Ever since Cittie was born, we’ve been worried about how our conditions might affect her. We feared that she’d someday think of us as inferior parents. But seeing her demonstrate these small acts of kindness puts our hearts at ease. It gives us faith that she might be adjusting just fine, and hope that she’ll grow up to be an empathetic and kindhearted person someday.

And if our conditions pave the way to her becoming that person, being chronically ill might not be so bad, after all.

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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