The bee stings of the new school year

Audrey has two days of the new school under her belt. We survived them but I can’t shake the feelings of the unknown as I drop off and pick up my girl each day. Is she getting enough food and water? Are they making sure she’s getting enough movement? Are they able to connect the dots of her frustration? Is she making friends? Did she get that bruise from equipment she was in? What does she love and maybe even hate about her new routine?

I did all the things to set her up for success. I filled out an “about me” sheet for her staff, I write notes and emails with questions and clues into Audrey’s world. But the truth is, it will never be enough. I may never know the happenings of her days and this stings. I have learned to sit in that sadness and then move on but sometimes the sting feels really unfair.

These worries and thoughts consumed me this week. They will continue to for quite some time if I’m being honest.

I know the school is doing the best they can and I’m sure I will grow to adore this staff and community. But being a mom to a child with a disability is filled with a longing for answers and a strong hope that you end up with people in their life that adore her almost as much as you do. You trust that they care for her and see her for all she really is.

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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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