Traditions

 

I was never the kind of person to begin decorating for the holidays early. Michael, on the other hand, is like a little kid when the holidays roll around...he could listen to Christmas music from October on. Sometimes I think my stint working at the mall growing up ruined holiday music for me (hearing the same Christmas tunes on repeat for months at a time wears on you). However, I’ve changed my stance in the last couple years.

 

As I’ve previously mentioned, Bridget isn’t interested in too many things. She doesn’t play with toys like other children do. She used to have dolls, little kitchens and a princess castle that she spent time exploring, but as the years went on and her syndrome progressed, she lost those abilities.  Besides books, swinging on the play set, and Disney songs, the one thing she would always focus on was our Christmas tree.

 

When we put up our decorations for the holidays now, they hold much more significance than they used to. They signify a time for us to continue making memories. They remind me to slow down and take in the world through my children’s eyes. They remind me just how precious the time you are granted with your children is. The other night we turned out all of the lights and just sat around our tree together...the 5 of us. It was magical. There is something so special about watching Bridget being mesmerized by the twinkling lights.

 

After the kids went to bed, I decided to look at pictures from the last holiday season. It’s become more of an anxiety trigger to do so. On one hand I love to relive those past experiences, but then I see the dramatic changes in Bridget. Last year at this time Bridget was able to swing on her swing (one of her favorite past times). Now she is able to swing a little bit but due to her stiffening joints she gets stuck on the swing and typically cannot stand up to get off the swing anymore, especially if she is tired.  This prompts an anxiety-attack sort of situation within her which if not caught right away can prompt for a long evening of confusion and frustration for her.

 

The stairs have become even more overwhelming also. I thank God all the time that our wonderful friends put in a wooden gate at the top of our steps. Luke can handle the stairs like a champ, but Bridget needs one on one assistance now more than ever before. And very rarely is she ever able to go up the steep stairs. This makes bringing all 3 children downstairs to play a difficult task, and usually a 2-trip job.

 

And the skill that kills me the most to have go, is her speech. We very rarely get to hear an actual word now. I have tried to get Bridget to say “love you” back to me (one of her favorite sayings) the last few months, and it’s like the words have just been stolen from her. But the realization the other night that I haven’t heard her say mom or mama in months about broke me. I remember early in the “diagnosis days” thinking about how brutal it would be when she wasn’t able to say my name anymore. And yet, here we are. With only 1 year of difference.

 

It terrifies me for the future. If we regressed so much in the past year, it leaves me contemplating what next year will hold. I know that I need to be grateful for the skills that Bridget does possess, and my goodness she has been the happiest little girl lately, but it is still crushing to see her slowly breaking down in front of us.

I know that people always debate on the right time to put up the Christmas tree (if you do that in your household). With my change in perspective, never knowing when will be the final Christmas, it’s never soon enough.  Hug your kids, turn on the Christmas music, and watch the glitter in their eyes.

Comments

  1. Thank you for taking time to write this entry. I am sad for Bridget’s struggles, but you have beautiful memories and will not have regrets. You have given me much to consider and many prayers to pray.
    Love to you and yours,
    Julie Bousum

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