Sleep, oh how I miss you! 

I know we have been so fortunate to not have a lot of medical challenges so far with Audrey’s diagnosis but this no sleep thing is rough! I long for the day that I can say “I can’t wait for bedtime!” Hearing others say these words makes me very envious and sometimes even angry because to me, bedtime is torture and possibly means that I will be up with her in 1 hour then in two hours then possibly for the rest of the night. Every parent knows how awful sleep deprivation can be; That afternoon cup of coffee necessary to get you through the day.  

For my husband and I, this is a nightly battle. Audrey hasn’t slept through the night in over a year. Her constant waking, restlessness and muscle spasms are so hard to manage. Lack of sleep is a nasty thing and makes you act very irrational sometimes. We have tried it all: melatonin, weighted blankets, soft music, rocking, massages before bed… One of my many hopes on this journey is to learn techniques to help her stay asleep longer, more peacefully and teach her to be able to self soothe better (this is a skill she does not have)

Being tired is awful but seeing your little one struggle to sleep is even worse.  

Rest up baby girl, mommy and daddy want to see you thrive. ❤

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