Merry Christmas and Happy New Year 2022!

I have always loved the Christmas holiday. 

As a child, there was believing in Santa Claus, the reindeer hoof beats on the roof (I still swear it happened), and the year we got a sled and a toboggan under the tree.

As a young adult, there was tension between what I liked about my childhood family traditions and what I wanted to skip or redo and the internal pressure I put on myself to be home on Christmas. 

As a young married person, there was the first Christmas tree, the first ornament, and the blending of two very different family traditions. 

As a new mom, There was the challenge of traveling, especially when sharing the grandbabies between grandparents who lived far away. There was the fear that my baby might choke on a Christmas tree ornament and there was the start of the Christmas morning cinnamon roll tradition.

As a mom of tweens, there was the gift chart, so no one had more gifts under the tree than another, there were family traditions that had become non-negotiable, and there was the hope that the Christmas bonus would be enough to cover the cost of Christmas dinner.

As a mom of young adults, there was the heartache of the empty nest, the work to gather and make it memorable, and the very true fact that Christmas presents had become more expensive.

As a grandma, there is a deep understanding that Christmas cheer is about the children, their smiles, and their new Christmas morning PJs. Of course, there is also baking Christmas cookies to share with the neighbors and watching Hallmark Christmas movies before Thanksgiving to get into the holiday spirit early. Being a grandma also means buying gifts all year round, saving them on the top shelf in the bedroom closet for December 25th, giving homemade gifts that can become keepsakes, and celebrating the season with Jesus at the center.

As a caregiver of progressing FTD, Christmas time has become complicated, especially for me – wanting, wishing, watching, and struggling with staying one day at a time.  Actually, I wasn’t sure I could write about it… Being honest about feelings as reliable as an old, rickety, wobbly suspended jungle bridge is hard. 

So far this Christmas season, I have baked cookies, made gifts, wrapped presents, and smiled at strangers (under my mask) in the grocery store. But on the inside, even while humming along to Frank Sinatra’s Christmas songs, I hurt. The grief of longing for Christmas’ gone by waves over me – the fragrance of memories shared and the absence of the physical help, often required to adorn Christmas spirit (and a tree), has left me unfairly lopsided. Doug is physically in attendance but quietly disconnected. I am deeply missing how we used to share this season, how we transitioned from Pumpkins and Scarecrows to lights and Nativities together.  

This year, responsibilities have been added to the common festivity preparations. Responsibilities like preparing and serving lots of healthy, calorie-dense meals and yummy sweet treats to add weight to Doug’s thinning frame and working in doctor visits for his new random health concerns. There is implementing and helping with consistent showering and daily (sometimes hourly, or even by the minute, depending on where we are or what we are doing) checking in with Doug to temper any anxiety or offset any apathy that may be vying for attention. There are also restless nights, feeling out of balance, checking in with myself for a bit of self-care, and so much more. I think you get the picture. 

In the past, Doug’s contribution to this favorite time of year overflowed with his flair for music, creativity, and overall merriment. He loved Rudolph and Santa, Starbucks and Costco, presents, and planning for the year ahead. Mostly, he loved the Nativity, the Christmas story, and the gathering of his family. But this year, while still physically present – occasionally whistling to a favorite Christmas carol, eating a Christmas cookie or two or three, and sometimes taking a cleansing breath while looking at the sparkle of lights and decorations – he is sadly missing. His enthusiasm is absent. His desire is vague. His sparkle is dim. My heart is heavy. 

More than any other, this year has felt hard and sad and lonely and festive and breakable.

I realize the holiday times are difficult for many people, especially this year after enduring so much loss and community fracturing because of COVID and the craziness of our national welfare. But somehow, I was caught off guard by the holiday blues I have experienced. 

There were beautiful, even sweet, moments woven into this holiday. It wasn’t all hard. We even laughed quite often, actually. But I realized that advancing into this new year will look different than many of my younger dreams and grander hopes had imagined. And at the same time, I recognize the call within, urging me to regroup and reassess. It’s funny how expectations can be both invigorating and disappointing. I am learning that a perspective fraught with unrealistic expectations often leaves me exhausted and haunted by disappointment. 

I have always been that person who plans next year during the week between Christmas and New Year’s. Typically, I get out the whiteboard, lined paper, and colored pens.   I write goals and objectives on 3×5 cards that I glance at throughout the year to keep me on track. I have not done much of that this year. I tremble to think about what 2022 will bring.  

However, I have decided what I will do in honor of the upcoming year and as a way to say goodbye to this last year.  I will focus on today.  I will make it the best day I (we) have. Not in the denial, disowning sort of way where refusal of reality takes center stage. But in the becoming pleasing way a flower blooms a little more each day, making the time it shares with us that much more beautiful and graceful. 

The seesaw of dementia continually remembers and reminds us that “Today is our very best day.”

So, to you and the world, while balancing my wobbly jungle bridge feelings and managing the intermittent collision of grief and brokenness, I pledge to be as present, honest, and loving as possible today and this year ahead, not worrying too much about the future. But instead, laugh a little more often and share in the beauty and grace of the moment, one day at a time.

Yes, I put this on a 3×5 card.

Karen