Unimaginable truths

Life comes with so many highs and lows that sometimes happen simultaneously. This weekend we watched our good friends get married. It was a day full of laughter and joy. While getting ready for this blissful occasion, I read the horrible news that another one of our CASK warriors lost her fight in this world. I have nothing but love in my heart for this mom and sweet girl. It is an unbearable thing to imagine as a parent. It’s not supposed to be this way. But yet in our community and in the disability bubble we live in, I see it much too often.

I’m sending all my love to this family as they navigate their new way of living. I wish I could help to ease the pain but the only thing we can do is honor our warriors in the best way possible. Keep fighting for the life they deserve. Celebrate any win no matter how small and never take for granted that this life can change in an instant.

I’m going to continue to advocate the best I can for Audrey, hug her even more than I already do and make sure she feels my love daily.

We will keep #KickingCASK one smile at a time.

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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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