My Mom LOVED Christmas, so much we would shop for Christmas gifts, decorations and ornaments all year long. Christmas music would start November 1st all through the house along with baking treats was as a regular weekly activity for my Mom and I. Each year as my Mom progressed it became more and more difficult for her to do these things; I started doing more as she would just watch because she could not stand or hold things without her jerking movements hindering her. Parties became more difficult to attend and I would be lying if I said that I wasn’t embarrassed of how my mom would jerk and make noises, because as a teen I didn’t understand why. 

As I got older I tried to come home from college as much as I could during the holidays I was no longer embarrassed of my Mom’s disease. She was still Patti, still had that smile and “Beautiful” perfume. My first 2 years in college I was home to continue the traditions she had taught me. The last two Christmases my mom was still with us I was “across the pond” spending Christmas with my at the time boyfriend and his family in Scotland. The first Christmas my mom wasn’t there I felt empty, I tried to put on a good smile as my Dad and I went across the pond for another Scottish Christmas, but I wasn’t the same.

Present Day: One of the hardest times for me now as an adult is the holiday season, especially Christmas. Coming into this season of my life where I have transitioned to new roles in my work, moved cities, and sharing the holidays between my family and friends I still have this empty hole though my chest. I crave those childhood memories with my Mom, Beach Boys Christmas soundtrack, Peanut butter kiss cookies, White Christmas and the best hugs you could imagine. So how does one move past this? Does it haunt every year? I wish I could answer those for you, but the only way I know to move this tightness is to share my “Pieces of Patti” with my people: friends, family, coworkers, all of you who read this. Sharing continues her spirit, and those memories and traditions aren’t filled with HD, but of love and joy and happiness.

Holidays are hard enough with busy schedules and crazy families in what ever shape they come in. Any child of an HD parent remember, these awkward and trying moments with your loved one. The embarrassed feeling is totally valid and normal and will fade and you’ll only remember the special moments that will be imprinted on your heart forever. For those of you like me who have lost someone to this disease, share. Share your memories, traditions, anything that made them special to you or someone else. This disease may have taken their bodies but it cannot steal the spirits of our loved ones and it is our job to carry this light into the darkness.