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The Never Of It

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A guest blog post written by Theresa Holman. “When I was a kid… my heart had different hopes. That I would learn talking, be the same as kids. The never of it, made it die. But sometimes it does come back.” – Britton

When Britton typed this… I held it close to my heart and then I went to my closet and knelt there with his iPad in my hands. I “showed it to God,” as if He hadn’t already seen it.

We cried together, Jesus and I. His presence came and I stayed there until I heard bath water turn on upstairs. Wiping my tears, I made a quick dash to see what I might’ve missed. I passed the bathroom mirror and stopped. Swollen red eyes, hair tied up on top of my head, nose running, dark circles. The never of it—time to care about what isn’t most important.

After typing such heart burning words, Britton jumped in the bathtub to self stim the water, and find joy in the feel of the hot and cold on his hands. Standing back I marvel at a person who can “say” something so deep, and then sit in the bath and laugh at the simplest of pleasures. Enjoying simple pleasures, is one of the many things Britton has taught me.

I read this quote recently and I loved it so very much…

“Why does a man hope to be found brave? Because we remember, if only faintly, that we were once more than we are now.” John Eldredge

It’s been a hard week of behaviours, and seizures, and hospitals. I needed to remind myself that my child, our children were born… whole! THIS… is not the life God wanted for any of them. How often has Britton typed that he is brave?

I don’t know what he remembers of being whole, of talking? I don’t imagine he remembers it at all. I do tell him, how he was a big talker, how he used big words. I don’t know if it would be wise to show him videos of himself. (I’m not sure I can bear it.)

The last few days I’ve struggled with the fear that I have lost him again. Behind glazed, far-away eyes, the boy who types is distant. The cruelty that is autism comes, burying him beneath unbearable pain. He copes with behaviors that are not explainable…at least not without words.

But the TRUTH is…he’s not lost at all, he’s buried and I must never quit digging.

“How many things have I let die, because of the never of it?”

I couldn’t stop thinking of how he phrased this admission. “The never of it.”

In the life of the vaccine injured, there are endless mantras we could begin with “the never of it.”

Using a fork to eat. The never of it, seizure drugs that work. The never of it, friends that love you anyway, the never of it…being able to drive, the never of it…real purpose. The never of it…_______ you fill in the blank.

Britton didn’t give me the chance to respond to what he typed which isn’t uncommon. I snapped a quick picture, barely before he hit “clear.” I caught it before his words were permanently erased… but that had already been etched on my heart.

I need to add that Britton typed the first sentence, then he erased it. The next day he typed it again and erased parts of it. He typed more on it, erased it…struggled with….what he was trying so desperately to help me understand, I’m unsure of?

It was several days before he finished the thought and added the period. It must’ve weighed heavy on his mind…because he typed the first sentence three times before he decided to finish the thought. I expect it was something he had trouble exposing. I understand that. I need to write my emotional wreckage down, but I don’t always want to share what I’ve written. It feels too naked.

“The never of it” of life is hard on most of us. It’s why we celebrate BIG things when something we waited for manifests and it is indeed time to throw a party!

Autism parents know well how to pray for something… many many years can pass before the “miracle” appears. We also know how to celebrate, to be overcome with joy when the “never of it” finally ends and we see fruits of the labor!

Things that feel like they will NEVER happen, (using a fork instead of his fingers, dressing himself…on rare occasions, brushing his own teeth, staying in the family room instead of hiding away from all human interaction.) The perseverance, the prayers, or maybe the miracle brought it to pass? We celebrate, and that is one of the gifts of living with autism. Being grateful for tiny things, is created if you are to survive.

I pray for Britton’s healing every single day. Then I pray for the thousands and thousands of families that stumble through the “never of it.” I pray for answers, and basically to grab some hope in this life of overwhelming difficulties.

The love, the love we hold in our hearts for our children, sustains us and though autism is a life of “the never of it” we never give up, never quit hoping, never quit fighting. When a young man with autism refuses to give up after all he’s been through, who am I to quit just because of “the never of it?”

https://scavengers-of-hope.ck.page/0ba506d8e0​

I wrote this in 2019…feels like a lifetime ago. The things that have changed are how rarely Britton types, and how the seizures have taken so much from him. I pray if you have a situation, and you feel like it may never end, that you hang on, knowing that giving up is not the answer. Because…God is who He says He is.

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