It’s okay, to not be okay.
I want you to close your eyes after reading this sentence and sit and ponder on it for a moment.
What if your child you dreamed of in your belly came out, learned everything that they should, and then one day stopped and went back to a baby cognitively?
Now really close your eyes and think about it. It could be your infant, 5-year-old, 16-year-old, or even your grandchild. Just imagine it.
This is called regression.
Now, stay with me.
One day I woke up and my beautiful son changed, like a switch of a light, to a person I didn’t know. He went from being an 18-month-old toddler back to a 6-month-old baby.
I know you’re thinking how can a child just change overnight? How do they go from saying da-da and looking into your eyes and answering to their name to being a statue of a person they once were?
Every day since then, I can see the light from the goodness of God through my son’s eyes. I can’t see him in his eyes and he can’t see me in mine. But I can see God. I can see and hear angels playing beautiful music through his eyes into mine.
You see, my boy isn’t like your boy and he never will. He’s trapped in a body with zero communication, no understanding of the world around him. He has low functioning Autism. My son cannot feed himself or change his clothes, point to anything. He doesn’t even know what the word momma is.
He’s never said momma. Will he ever say it to me? I pray every day I don’t have to wait until heaven to hear it. I try to understand this and how this happened but I can’t and I know there is a reason why Jameson was made this way. I will be asking God as soon as I meet him, you can bet on that.
Most days I can find the happiness and the joy and watch him be happy and stim to his favorite shows. When I see his nose crinkle from belly laughter as his daddy is tickling him.
That is most days.
Today isn’t that day. And a person in my life told me something recently that I will never forget. This life is hard. It brings you to your knees and knocks the wind out of you hard most days. But it’s okay, to not be okay.
We don’t have to pretend it’s a joy to have a child who bangs their head on the wall or screams non stop just because they like the way it feels on their vocal cords. ITS OKAY TO NOT BE OKAY! I refuse to pretend and paint a picture that every day I find the joy. I can’t and I won’t.
I have accepted that this is my forever. I will always fight for my son and his quality of life and I will be happy when we have our victories, but man, some nights when he goes to bed, I can cry and ask why and cry some more.
But I get up the next day and carry on.
But please special needs parents remember this, it’s okay to not be okay.
