A recurrent bleed delayed our Christmas preparations, but it’s OK

Adapting to challenges is part of life with chronic illnesses

Alliah Czarielle avatar

by Alliah Czarielle |

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In the Philippines, where we live, Christmas isn’t confined to a single day. It unfolds as a season that spans about a third of the year, kicking off in the first of the “-ber” months.

As a child, I cherished the joy of strolling through streets adorned with flickering lights and gazing at glowing stars hanging in front of nearly every home. While the streets may not shine as brightly nowadays, and exterior decorations may be less common, the holiday spirit persists in shopping centers, Christmas gatherings in schools and workplaces, and cherished family traditions.

Celebrating the holidays in our own unique style

My husband, Jared, and I have been married for five years. For some years before our wedding, and a couple years after, we spent the Christmas season at my in-laws’ home. We engaged in the communal effort of decorating their large house, usually starting in September. Our holiday routine included preparing traditional Filipino dishes for several people.

Now a distinct family unit, Jared and I have personalized our celebrations. Instead of setting up our Christmas tree in September, we opt for a more comfortable setup in late November. The initial weeks of December are dedicated to shopping for gifts and stocking up on supplies. Jared also showcases his culinary skills with dishes from various international cuisines.

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How to celebrate the holidays while you handle your hemophilia

A sudden recurring bleed caused a holiday hiccup

Over the past two years, we’ve made it a tradition to visit Dapitan Arcade, a traditional-goods and home-furnishings bazaar that gets extra lively during the holiday season. We feast our eyes on affordable Christmas trees, holiday-themed ornaments, singing figurines, and other decorations. We also make a point of purchasing new home decor. Last year, we acquired our first full-sized Christmas tree, along with some extra adornments.

This year’s visit was both thrilling and fruitful. Jared, who has severe hemophilia B, had recently recovered from a calf bleed. As it was seemingly minor, he didn’t think much of it. Despite the road construction near our home, we ventured forth, knowing we’d face the inconvenience of parking blocks away and hauling our purchases up to our house.

The plan was to set up our Christmas tree and decorate our home immediately after our trip, like we did the previous year. However, Jared felt a tight sensation in his calf, signaling a recurring bleed. As he opted for complete bed rest over the next three days, our Christmas preparations took a temporary back seat.

A fashionably late Christmas setup

Our Christmas tree adorned our home on Dec. 6, a couple days after Jared had fully recovered from his bleed. By Filipino standards, we were fashionably late.

Surprisingly, our daughter, almost 5, didn’t mind the delay. Perhaps the silver lining is that her interests have shifted. While she still appreciates lights and decorations, lately she’s been more enthusiastic about online games and gaming videos.

She now exhibits a heightened awareness of risk and danger, exercising caution in her play and everyday activities like crossing the street. Now that she understands her dad’s conditions better, she recognizes the need for rest when he’s a “bleedy boy” and is extra mindful of his seizures. (Jared also lives with epilepsy due to a cranial bleed in his youth.) Whenever he is being unusually quiet, she’s quick to ask, “Daddy, are you having a seizure?”

As a family, we recognize old traditions, but we also acknowledge that things may not always go the way we expect them to. Adapting to our challenges means we must sometimes do things differently, and that’s OK. Our daughter knows about health conditions that many other children aren’t familiar with, so she responds in ways that may not be expected of a child her age.

I’m simply thankful that she has learned to trust that the Christmas magic will always be there — even if our preparations may sometimes come late. And even though there may be days of few decorations or less expensive gifts, I hope she grows up knowing that the true spirit of the holiday lies in the bond of a family that loves genuinely.

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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