As I entered this foreign world of parenting a child with disabilities, I felt like I was alone on an island.
Observing others experiencing parenthood differently was extremely isolating. That’s why I am so thankful for the community that I have found in the online world.
The social media world can be a very toxic place, but at a time when I felt completely alone it was exactly the lifeline I needed. I had a hard time envisioning myself as a medical mom. Every depiction was either extremely depressing or the opposite end of the spectrum of being unrealistically positive and “inspirational”. I could not really see myself or my experiences in any of it.
Early on I was introduced to the world of online groups that were more specific to our situation. It was eye opening to see so many families from all walks of life feeling similar emotions as mine and experiencing the same traumas I have experienced myself.
Being able to express raw emotions without feeling apologetic. Being able to be angry with the hand I was dealt without feeling shamed. Hell, it’s even nice to be able to use medical terminology without explanation.
It has been so beneficial seeing other family’s routines and lifestyles, and I could finally envision myself as a parent. In my interactions with typical families, I found that they attempted to console me by telling me “everything is going to be alright” and “don’t always listen to doctors”.
I would hear that she was going to defy all odds, and wind up able bodied like her peers. It never sat well with me. I’ve always been a realist to my detriment.
In interacting with families similar to my own, I got a new perspective.
That my life may not end up as I had previously imagined it. That I very well may end up parenting a severely disabled child. But most importantly that despite all of that, it was going to be okay.
It makes me optimistic seeing families like mine still travel and have meaningful relationships. That is what I truly find inspirational. Not denying that life can be more difficult in many ways, but seeing despite everything, it hasn’t stopped them from living life to the fullest.
Not glossing over their hardships but being able to witness others navigating through this unique life has been so beneficial to me. And seeing how beautiful this life can truly be.