When I was a child, I wrote in a journal that my favorite part about Christmas was the feeling it created. It’s not just the joy of holiday lights and carols, the peace and awe of midnight Mass, the anticipation and excitement of presents, or the contentment that lingers throughout the season. The feeling of Christmas has always been a culmination of this and more. It’s a feeling that can’t be defined by a single word.
Then came Christmas of 2008. It was the first celebration with my son Cullen since his diagnosis of pulmonary hypertension (PH).
What I experienced that year is how I imagine the Grinch felt when his heart grew three sizes. Something was not quite right, and what I was feeling wasn’t worthy of a happy ending to a Christmas story.
I went above and beyond that year to make sure my family experienced all the good feels of the holiday. But hiding behind my smile was panic. At times, its intensity was like when Kevin’s mom in “Home Alone” realized what she had forgotten.
During every precious moment, PH infiltrated my thoughts. How many more Christmases would I have with my son?
I shared in a previous column about the lengths I went to trying to find the one toy Cullen asked Santa for that year. Decorating the tree brought tears to my eyes, but not of joy. Even the awe of the children’s Nativity Mass was later extinguished by PH. Cullen and his brother looked precious dressed as shepherds, but the red sweater worn underneath was hot. Perspiration caused the dye to bleed and stain Cullen’s central line. There was a moment of panic when I thought it was his blood. Months later, we were still explaining to concerned medical staff why his line was red and not white.
Ironically, that Christmas turned out to be one of my favorites. I treasure the memory of my children’s sense of wonderment and Cullen’s excitement over the gift I had shopped multiple stores to find. Even the central-line fiasco is now a funny story to tell.
It’s also the year I learned a valuable lesson. I had opened the door to a thief that is PH. But faith and family kept it from stealing everything. No longer do I let the fear of the unknown take what happiness is before me now.
The Christmas before my son’s heart and double-lung transplant, when he was frail and in heart failure, the good feelings were still overflowing. As Cullen lit the Christmas star on top our tree, all I felt were tears of joy. Remembering that moment as anything other than beautiful would be a Christmas tragedy.
Sadly, tragedy is something we would eventually come to bear at Christmas. Cullen lost two dear PHriends over the years, one close to Christmas and another on that very day. How do you find joy in Christmas after experiencing such a loss?
We light a special candle every year in remembrance of them and the many others taken too soon by PH. After a moment of silence and quiet prayer, the candle becomes a part of the beautiful light that surrounds us at Christmas. The memories brighten our spirits, and sharing them has become a tradition.
In the words of Fred Rogers, “I like to compare the holiday season with the way a child listens to a favorite story. The pleasure is in the familiar way the story begins, the anticipation of familiar turns it takes, the familiar moments of suspense, and the familiar climax and ending.”
Don’t let worry or sadness become what is most familiar to you at Christmas. Enjoy old traditions or make new ones. Gather your family and friends and share happy memories that include loved ones who are missed. Make it a season of peace and not panic.
Note: Pulmonary Hypertension News 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 Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.