During this time of the year FOMO (fear of missing out) sets in. I become even more aware that our life is full of routine. We read Halloween and Christmas stories all year long.
We don’t bake fun holiday treats, go trick or treating with friends, participate in festivals, get to hear her tell us what costume she wants to wear or even carve pumpkins.
You see, it doesn’t matter what day of the year it is, Audrey still has the same schedule for the most part. I keep waiting for it to get easier but the fact is, I’m not there yet.
The hardest part about living a life you never envisioned is letting go of those expectations. Now, we definitely try new things (modified) but it isn’t the way I thought my kid would get to experience life none the less how I would experience parenthood.
Audrey is extremely passionate about the things she does love to do and I am forever grateful for that.
But that doesn’t make it any easier to see others living a life in a world that just doesn’t make sense for our family most of the time.
The holiday season hits hard. I hope one day is doesn’t.
We always try to give Audrey the most positive experience and dip her toes into traditions. Sometimes we have some success and often times some joy, so we celebrate that.
Tomorrow I will dress her up in the costume that I chose for her. Not sure if that will ever not sting.
But regardless, we will try our best to give her a fun day filled with Audrey approved activities.
Happy Halloween everyone! Don’t take for granted the things your children can participate in or the things they can communicate to you. Someone watching may be longing for that experience no matter how big or small.

My son n my daughter have CASK gene mutation too. His is severe n hers is mild. And you r right just cause thy have a reare genetics downstairs mean they can’t be like other kids 🙂
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Look at her with her little pumpkin! Love you both so much! I hope your family has the best Halloween tomorrow doing the Audrey activities! And such a great point for people to never take things for granted 💓🎃
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Such a sweet picture of your precious little girl.
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