I love being a mom. I always wanted to be one as early as I can remember. I would care for my dolls, play with all the younger siblings of my friends and family members. When I was old enough, I babysat and worked at an after school program.
I LOVE being Audrey’s mom and I very much hate being her caregiver.
I know that there are many times in motherhood where these lines are intertwined, especially when you have littles.
But the older Audrey gets, the more clear it is to me just how much I wish that I could solely play the mom role.
In the early years of navigating our new norm, this thought would fill me with so much guilt. I would tell my husband and immediately regret saying it out loud.
But as I met more caregiving moms in similar situations, I started saying it more confidently.
For most people, caregiving/caretaking comes at the end stages of a loved one’s life. You do it because you care deeply and want to see them live happily for as long as possible.
Being a mom to a disabled child gives you a one way ticket to caregiving for the rest of your life.
You of course love your child unconditionally and would do anything for them.
Audrey and her existence is never ever a burden to me.
But the lack of accessibility definitely is. The fight for services and programs to help her maintain social and cognitive growth is something I wish I didn’t know about.
Some days, particularly on school breaks, that burnout is highlighted.
We get tired of each other and that is okay. Watching children grow as a parent is the best and most humbling experience. Caregiving moms live in the same space for much longer, sometimes forever.
I will care for my girl till my last breath. The thing that isn’t said out loud enough is that I wish I didn’t have to.
#AudreyJo
#KickingCASK
#Disability
Kicking CASK 