Following her lead

Tomorrow I will dress my beautiful 8 year old child in her Halloween costume. She didn’t pick it out or give me any clues as to what she wanted to be.

You see, my daughter loves books about holidays, loves when we talk to her

about traditions and characters and she definitely loves a good chocolate treat! The actual day of the holiday though isn’t something she quite grasps the concept of. We usually can’t participate in the “traditional” activities for many reasons. Maybe one day we will but for now we will eat our regular dinner and get ready for bed like we do any other day.

This use to wreck me. Put me in a funk for days.

I would be lying if I said it doesn’t sting to see families experience these traditions.

But this year I followed her lead. I didn’t force the carving of pumpkins or endless trunk or treats. I didn’t say yes to activities that don’t make sense for our family.

I WILL dress her up for school and talk to her all about the fun she will have with her friends in her class. I will read her stories like always and then kiss her goodnight. As I watch her on the monitor until she falls asleep, I will think about the kids trick or treating with neighbors, then I will turn off our porch light and go to bed myself.

My precious girl. My unicorn.

You are so loved and every night I get to tuck you in, I will count that as a good day.

Audrey’s first Halloween 2015
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Author: Rachel Alves

Hi there! I am a special needs mom to a beautiful, sweet girl. Audrey has a mutation on her CASK Gene. This is a rare genetic disorder that effects her globally. It has caused a seizure disorder as well as gross motor, fine motor and speech delays. A Microcephaly diagnosis comes along with it as well. Our last 8 years have been filled with therapy, learning about our daughter's disorder and also learning to cope while finding joy. Thank you for taking the time to read about our journey. For more information on the CASK Gene, please visit my Instagram @alvesmomkickingCASK.

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