Additional Needs
Puberty has landed
by Carolyn Voisey
on 11th April, 2024
You’ll Never Know
I was chatting with a friend a while ago about our daily life and I mentioned something about heading to another appointment, and said “You know how it is."
To which she responded, “No, I don’t know.”
Most people would have nodded politely and moved the conversation along.
She didn’t.
She acknowledged that she doesn’t “know.”
She can imagine, she can try and put herself in my shoes, but she can’t know.
For some reason this small comment has always stuck with me. I appreciate her saying that more than she will ever realize.
Maybe it’s because so many people don’t try to understand and even if they try it’s still hard for them? Maybe it’s because I thought I knew before I really knew .
Or maybe it’s because there are days I feel so alone I want others to really know what this life can be like.
For many years I cared for a very special little boy.
I transferred him from his wheelchair to a chair many times a day, pushed him all around Target and fed him strawful by strawful of a blue icee, and watched him squeal with delight as he watched The Wiggles….over and over.
Thanks to him I can sing the mashed potato song like nobody’s business. Over ten years I cared for him, so of course, I thought I knew.
I thought I understood the struggles. I thought because I cared for him day after day I “got” the pain and knew the joy. I honestly did, but boy was I wrong.
It’s like I was standing in the doorway of their home but never inside.
You can only see so much from the door.
You can’t go upstairs and feel the carpet on your feet. You can’t take the steps to the basement and run your hands down the banister.
You can stand in the doorway leaning as far as you can to get a good glimpse, but you can’t actually touch anything inside. You can smell the fragrance of dinner but you can’t actually taste anything.
There is so much more. There’s only so much you can see from the doorway.
And until you take a step inside, you won’t know.
Now that I’ve crossed the threshold, I do really know.
Our four year old has congenital disorder of glycosylation; a rare metabolic condition that affects nearly every part of his body.
He is nonverbal, uses a wheelchair, struggles to do the simplest task and is the greatest thing to ever happen to me.
Since he came along I have had emotional aches in my body I never knew existed. I have shed countless tears over things I never dreamed I would experience.
I have cried in the shower or on the way home from an appointment more times than I can count.
But I’ve also cried tears of joy. Many tears of joy.
I’ve experienced happiness that you can only feel when you’ve taken a step inside. Joy you can only feel when you are no longer looking in.
Now I know. Now this is my house. I’m no longer looking in. I can feel, touch, smell, and taste it all. I know now that unless you are inside you won’t know.
So if you are trying to get someone to understand your life or you feel frustrated because those around you just don’t get it - just know this - they can only see so much from the doorway.
They will never know.
