A typical night 

It’s 10:38 pm and I have been asleep for maybe 1 hour. I awake to a sound coming from our monitor and see that Audrey is tossing and turning in bed. I get up and go pee because I know it will be my last chance until I have to go in her room to try and get her back to sleep. As I struggle with her, tossing and turning, I feel helpless and tired. I can’t help but wonder why I can’t calm my baby. Why is something as simple as night time sleep so hard for my girl? Audrey has to work hard for everything she does. And she does it all with a smile on her face 95 percent of the time. She truly is my little warrior. But gosh, I wish things weren’t so hard for her. Now it’s 3:28 a.m. And her melatonin that I gave her at 2:45 has finally kicked in. She’s asleep… for now. This is when I should be asleep but my mind can’t shut down. Guess I will try and close my eyes a bit before she needs me again.  

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. View all posts by Rachel Alves