I’m Bringing Christmas Joy, Despite the Challenges We Face

I am adamant about not letting the COVID-19 pandemic and the ongoing issues with my husband’s health dampen our Christmas spirit. This year, I have decided to do a little more to observe the holiday.

As a faith-based family, we know Christmas is not all about presents and festivities. And here in New Zealand, the holiday is not all about cold, white snow and wearing ugly sweaters. In fact, we are hitting peak summer. As our northern hemisphere friends are enjoying time together around the fireplace, those of us here below the equator are celebrating on the beach with picnics, or enjoying good barbecue get-togethers.

Now don’t get me wrong; I am as frivolous as the next person when it comes to getting presents for family and friends. And this year especially, I am going above and beyond with decorations. Even the dog won’t escape wearing a Christmas-themed outfit. We had to spend so much time at home this year, so I want to step it up a few notches for the holidays.

Because the pandemic has hung over so many aspects of our lives for nearly two years, many of us have had to confront our own mortality. If we are not careful, we can quickly lose our loved ones, or even our own lives, to the virus. I know that in my own family, we all have had to be a little less selfish about our wants, and think about how our actions could affect someone else.

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My husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013, and since then, his health has declined considerably. People like him who are immune-compromised must be extra vigilant these days. While getting the vaccine offers a layer of protection, he still has to be very careful when he is out in public.

So this year, I want to create a space where family and friends who visit during the holidays can put all their cares and worries aside, and be thankful.

Firstly, I want to give thanks for traditions, which, when they are carried from one generation to the next, become part of the fabric of who we are as people and as a tribe, and bring meaning to our lives.

Secondly, I want to create a space to celebrate life. Good or bad, our journey through the year counts for something and should be acknowledged. Making space for this can help us to realize that our lives should be purposeful and meaningful, and celebrating will encourage us to do better next year.

Finally, I want to make space to be thankful for our home. What I refer to as home is not limited to the structure of the place where my family lives. I also mean a sanctuary, where the patients and caregivers I support as a patient advocate can turn to find refuge and care. I am thankful for all the people I have met these past few years. I want to let them know that they can always find a home with us.

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Note: FAP 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 other 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 FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.