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The Hardest Part of Parenting a Child with a Disability

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I think the not knowing is the hardest part.

This is me after 2 hours at a doctor appointment with my young son who has an intellectual disability. I’m eating cold pizza because I was too tired to make anything, my hair is blown from the wind, my eyes are red because of lack of sleep and my nose looks rudolphesque because the mask always takes off my makeup. I’m tired in this picture.

Really, I am. But.

I am mostly worried about how tired he is right now.

Something is off but he can’t tell us what. Our only clue is behavior. That’s it. But it’s something.

Is it physical? Is it developmental? Is his heart broken? Is his new para nice? Does he have pandemic fatigue? Does he have any playmates at school? He used to. But I don’t see their names on his communication sheet any more.

We’ve been to doctor after doctor. Today, we took his ear tubes out. One of his ears was inflamed. I wonder how long it’s been bothering him?

But is that the only thing?

So, we have more appointments and conferences scheduled. We take him from place to place searching for answers. We cuddle a lot in between.

And I go to bed at night, wondering, worried, and praying, knowing there’s not much else I can do.

I’m tired. I’m tired of not knowing.

But I’m mostly tired thinking about how tired he must be.

Jillian Benfield is the author of the free ebook 5 Spiritual Comforts for Special Needs Parents. She invites you to follow her writings on Facebook and Instagram.

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