You're a good friend. You're kind and nice and fun to be with. I'm glad we are friends.
But I must say there's a huge chasm between us that I'm guessing you've noticed. That chasm is made by the fact that our lives are so vastly different because of my child's disability. It feels as though we are in different galaxies.
I want us to relate. I want us to understand. But our lives are so very different. The realities of our day to day couldn't be more different.
You ask me how I'm doing. I say, "Good!" and try to sound as upbeat and positive as I can muster.
The truth is you can't possibly understand my "good" or my "fine" or my "normal." I reply with those happy, unassuming answers so I don't have to dredge up the details that would bore you or, worse yet, horrify you. My "good" doesn't mean I'm whistling happy or skipping through the daisies. My "fine" is relative.
When I say that I'm fine, here's what I really mean:
All of these things are happening every day. All of them are wearing on me. But I'm hanging on. I'm doing okay. I'm surviving. I'm breathing.
So even when I answer, "fine," please see past it. Please know that I'm struggling and tired and stressed. But also know that I can't begin to explain my life, my thoughts, and my struggles to you.
Being my friend means being okay with that. Being my friend means not making me explain everything and understanding that "fine" means I need your kindness and your support. Being my friend means to understand that “fine” means I’m glad you’re my friend, and I’m glad we can pretend that everything is okay for a little while.
Connecting with other parents is so important to well-being.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.