“Part of my grief and fear of raising a child with a shortened life expectancy revolves around my other children.
Their normal is much different from their same age peers.
For them, it’s normal to have their brother in the hospital.
And ask, ‘Is Karter gonna die?’
It’s normal to have nurses, strangers really, in their home in masks.
Or gowns, goggles, and face shields.
It’s normal to always have one parent stay behind with Karter, while the other parent takes them to and from events and activities.
We are often split.
It’s normal to never attend a family holiday or gathering with their brother, unless it’s at our house.
You see, the world is not accessible and inclusive, when you have a child that requires a wheelchair, adult changing station, stander, hospital bed, etc. And traveling is almost impossible.
So we often don’t.
It’s normal to have to wait because Karter’s needs come first.
It’s normal to have to run to get a towel because he might throw up.
Or pause the beep on his food pump.
Or grab mom and dad a syringe.
Because they know how to do all this.
It’s normal to see their brother’s body jerk or twitch or gag.
And then report that to mom and dad.
I could go on and on.
As their mother, I worry constantly.
Am I getting it right?
How do we do this?
And then this morning, a typical morning, while Gabby is playing her usual dolls I see this.
She grabs the doll in the wheelchair and plays alongside her Barbie and LOL doll.
She points out that her LOL doll has ‘walkers’ too!
And then continues on.
Because to her, disability is normal.
It’s not new, or scary.
It’s not unapproachable.
In her little pretend play mind, disability is fully included in every scenario.
It’s moments like these that reassure me we must be doing something right.
If only everyone in the world had Gabby’s lens.”
This story was submitted to Love What Matters by Tiffany Goodchild. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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