It has been a long time since I posted here. I’ve been writing regularly for MuscularDystrophyNews.com and CatholicMom.com. Both are a dream come true. For those that have been here from the beginning know I never believed I could be a writer. But now I am paid to submit columns and can see name in a byline. I will never, not be thankful for that.
This is an article I wrote to submit but holiday articles can’t be submitted after the holidays. However, I think this is something worth getting out there because I don’t think I am the only mother/parent/caregiver that feels this sentiment during and after the holidays. I hope you enjoy, and I hope to write here more often. Thank you for sticking with me.
Small victories are my favorite thing to celebrate. But I also like to celebrate my children, my husband, our home, and our life. The holidays are a wonderful reason to celebrate too.
This time of year, outside our house, is strung with dozens of strands of colored lights. You’ll find a blow mold of Santa and Frosty, too. Once through the front door decorated with a swag of fresh pine, the walls are decorated with natural greenery and twinkly white lights. Several Christmas trees of all shapes and sizes are placed in every room, the biggest and best trimmed in the living room. Collections of old Santas and Mrs. Clauses can be found at every turn.
Food enough to feed ten or more people is almost always in a constant state of preparation. The smells of baked cookies and pumpkin pies linger long enough for another batch to go in the oven. Prime rib and soups are served on Christmas and Christmas Eve and reheated for days as leftovers.
This year gifts were put under the tree Christmas Eve to save them from being unwrapped and tossed around our youngest, an 11-month-old girl named Callie.
We had a wonderful Christmas. All seven of our children, ages 11 months to 21 years old, were home together for an entire week. We had the kids’ boyfriends and girlfriends here, too, and even an extra dog for a couple of days. We had an ugly sweater party with cousins, made gingerbread houses, and celebrated a family friend’s wedding.
I have no reason to feel sad, yet a piece of me is hurting. I think this way every holiday season. I watch my children, taking snapshots of them in my memory, wishing I could freeze the beautiful moments in time so I never forget.
My three sons with Duchenne Muscular Dystrophy (DMD), especially so, because time with them is a thief. Their rare disease doesn’t take a Christmas break. Instead, as they happily eat a cookie or laugh at their baby sister, DMD is at work, progressing through bodies where the disease has already wreaked havoc.
In the last several weeks, many young men and boys with DMD, some of whom I know and others I am familiar with because of social media, have been very sick. Some fought for their lives for weeks and made it back home, while others fought and didn’t make it home. Last Christmas was their last Christmas.
My heart must have holidays confused because that last line haunts me. And although I try very hard not to think about it and focus on the joys of here and now, it never goes away, like a ghost living in the closet of my heart. So I anticipate grief but don’t know how not to either.
I feel it in little waves of anxiety, a stirring in my stomach that sometimes leaves me nauseous. A voice says, “this could be their last Christmas. They could get sick.” My oldest son with Duchenne, 17-year-old Max, is home today with the symptoms of Influenza. We are managing it for now, but what if he gets worse? What if there are complications? It’s hard to so often be in a state of balancing logic, reality, and fear.
And I ignored it and continued with our holiday as planned. But because I can’t tell the voice that it’s not true, because I don’t know that it isn’t, can’t prove it wrong, I can’t forget the voice either.
And so it remains like an uninvited guest. Instead, it becomes part of the celebration, creating a holiday tinted with grief.