For my family, the winter months have always marked the toughest times for our PANS son. The typical day is challenging enough, but the stress of the holidays put a tremendous amount of pressure and strain on him, and it’s not just the day of Thanksgiving, Christmas, and New Years, but the weeks leading up to them. There is too much stimuli, from the decorations in the house to the friends and family that visit. We’ve had to scale back quite a bit to make these weeks less stressful. We’ve had to sacrifice some traditions, curb our celebrations, adjust our activities, and tailor our plans. We’ve had to slow down and choose our battles. Most of all, we’ve had to be extra patient, understanding, and calm.
I don’t decorate the house anymore, except for the Christmas tree – one of my chosen battles. With two other children, that was one tradition I couldn’t give up. But we don’t put lights around the windows, we never play holiday music (which honestly is a nice break from hearing it everywhere else), baking sweets isn’t always possible, and friends and family visit only on the day of holidays, and sometimes not even then.
It is challenging to have to continually change, adapt, and sacrifice my life to suit the needs of my PANS child, especially around the holidays when I need the pickup and joy of simple pleasures, when I relish in old family traditions. But these things are not gone, and one day, I know I will be able to partake in them again, in which they will be all the more special. I had taken many of these delights for granted. Peace and joy were so easily attainable before, but I let trivial things get in the way, when today, there are monumental things that get in the way—OCD rages, panic attacks, starvation, and messes that are difficult to wrap my mind around how I’m even going to begin cleaning them up.
The holidays are not about planning festivities, buying gifts, or even decorating a Christmas tree. It’s not about the lights, the food, or sadly, the traditions. It’s about loving those around me, supporting and caring for them, and being grateful for all that I already do have. It’s about letting someone cut in front of me, listening more, creating positive energy, and taking a break. Yes. Taking a damn break. My laundry can wait, the dinner can be canceled, and the delayed Christmas errand is not the end of the world. People will understand—I’m taking care of a severely disabled child. That is my holiday miracle.