For the past four years, the holiday season has been one that we have dreaded. What should be a joyous and uplifting time of year, is filled with pain and sadness. AJ and I push through each season and take a deep breathe when we reach NewYear’s. There are so many reasons this time of year is hard for us. The hardships of travel for Maggie, figuring out presents, the massive crowds everywhere, and the constant management of Rett symptoms. So in the past years, we weren’t truly getting to enjoy the holidays because we were just trying to survive them.
Something is different this year though. There is excitement in the air. The weekend after Thanksgiving I pulled out the Christmas and Hanukkah decorations. (We celebrate both). I was excited to decorate, because for the first time in years, Maggie was excited to decorate, and then Gray was excited to decorate. All of a sudden, we were all excited to decorate. We played Christmas music. We danced to Hanukkah music and decorated our Christmas tree. Watching my family have a great time, doing something we should have been enjoying the past few years, but was really hard instead, made my eyes fill up with tears.
We have been through some dark times, but there is a light at the end of the tunnel for us. I’m not going to say this holiday season is going to be easy. We are traveling to San Antonio and the past few years, our travel has been the stuff of nightmares. Maggie screams and melts down because the airports are too chaotic, its really hard on her. Then, figuring out presents for her is also difficult. I’ve broken down crying in Target because she can’t play with the toys other kids her age play with. We have to adapt, hand over hand, and put so much thought into everything. Its exhausting.
That being said… Maggie is so excited for Christmas. She navigated to” travel” on her computer, then said she was “nervous”. She navigated to “Christmas”, then said “excited”. So she is excited for Christmas but nervous to travel. Ditto. I think that pretty much sums up all of our feelings.
These pictures are from last year 2016. I’m hoping to get to the mall this week, but honestly this Santa was amazing. (courtesy of my friend Leslie Romenesko, whom hired him for her party)
Merry Christmas! Happy Hanukah! Cheers to all that celebrate! Happy Holidays! Seasons Greetings!