How to Keep the Fa-La-La Around Family This Holiday Season

December 13, 2024December 16, 2024 Category: Tips and Advice Posted by NFED

By Beth Orchard

Holidays can be simultaneously a fun and exciting time of celebration but also stressful. Children’s concerts, pageants, shopping, baking, cooking, travel to grandma’s house and more can fill our lives with equal parts dread and joy. That is a “both/and” kind of life for many.

Coping with a rare disease or supporting family and children who cope with rare disease at the holidays can add to the challenge of the season. For our family, it has been a reminder that we don’t travel light this season.

Often we pack medical kits, medications, doctors’ numbers and lists of things we need to bring to keep everyone safe and healthy. Let’s unpack some tips for keeping the fa-la-la in your holidays and mental coping strategies to thrive this season.

Family Holiday Traditions

Growing up, my family was small with just my mom, myself and my brother. Sometimes, her mom and sister came by. Sometimes, other visitors stopped in or we were with my dad. Thanksgiving and Christmas were not big events. As I got older, I celebrated holidays with my then fiancée, then husband, and eventually kids.

Holidays have meant lots of car travel, packing, unpacking cars and houses and being in other spaces with family where there usually were lots of people and kids. Liam is affected by x-linked hypohidrotic ectodermal dysplasia (XLHED) but also deals with serious asthma.

Since most of our family is in Michigan, we often travel from Chicago several hours depending on weather conditions to spend holidays there. A big challenge is packing up all of Liam’s meds, inhalers, lists of who to call when needed and making sure we know where the nearest urgent care and hospital are.

We have needed urgent care on more than one occasion due to illness that resulted in bad coughs, infections, and asthma exacerbations. Mentally coping with all of this has been difficult at times. As a mom, I struggle with anxiety and sometimes depression, especially during the darker times of winter here in the Midwest.

The holidays seem to be all hustle bustle and taking care of Liam who often gets sick right around holidays or just after because of his immune system. This in addition to being around family who needs reminding of his allergies, asthma, overheating needs and more which can feel exhausting.

Self-care is really important, especially during this season.

Why Self Care Matters

Self-care became really important this past year because we had a long, ongoing home renovation along with some health and financial challenges. Rare disease is part of our story, not the whole story. It is easy to get caught up in how hard things can be but we also had to look for gratitude.

This meant being thankful even when life was pretty stressful. Last year, we got some cheeky shirts to commemorate the challenges and spent time at another location outside our home for New Year’s Eve for the first time.

The kids got to swim and we got to enjoy a little dancing and having fun with the them. It beat being in a home under renovation for a few days! Mentally, it was the best thing we did for self-care.

It looks different every season. Choose what works best for you. It may not “cure” what ails you, but it can be the boost you need to keep going.

Some Fa La La Strategies

If you’re like me, it may feel like the fa-la-la gets kicked to the curb as soon as holidays roll around. Whatever you celebrate, self-care is really key to enjoying, not just surviving, the holidays. I have learned a few things through the years, especially when Liam was younger.

A few things to keep present this season:

• Be intentional. Schedule self-care time. This might mean quiet time at home, a mini retreat nearby, quiet morning time or taking time off work to focus on what brings you peace this season.
• Don’t overdo it. Look at what’s scheduled and see what can be rescheduled or canceled. Clear the clutter (and calendar) to make room for some peace and quiet.
• Get into nature. Go for a walk, try cross country skiing or snowshoeing. Head out to a new café or meet friends in a new place nearby. Go into nature and breathe some fresh air. Be reminded this season is one of slowing and moving into a new year ahead (for most of us if you celebrate New Year’s Eve at the end of December).
• Breathe. Try yoga, pilates, mindfulness, breathing techniques and for the love – get some sleep! Sleep deprivation really wreaks havoc on our mental health. Create space where drinking enough water, sleeping and breathing deeply are more important than rushing through this season
• Find a tribe. Spend time with people who you love and love you back. It may be family, friends, or even traveling. Be with others who see who you are and offer you space to be yourself, especially dealing with rare diseases. It can feel isolating if people we love don’t see us well. Embrace being with people who care for you as you are as it can boost your mental health

Most of my experience with holidays feels like an intentional pulling away from cultural expectations of busyness and focusing on why I love this season. There are sights, sounds, and smells that only come around this season (peppermint, I’m looking at you!).

If you love or loathe this season because it is hard, remember to breathe. Take a moment to find your people. If it isn’t family, find friends or even serve others who may be alone this season.

Giving back can be great for your mental health. We love serving together in small ways. It is a reminder we are all on this journey together, no matter who we are or where we are from. That is the true hope for the holiday season.

If you would like to receive more support about mental health, check out the Wellness4Rare program.

Beth Orchard is a guest blogger for the National Foundation for Ectodermal Dysplasias. She and her son are affected by XLHED. She and her husband, Steve, live in Illinois.

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