How to Hold it Together When the World Falls Apart

Hi you guys!

This is basically my week again…only different surgery on the stomach…I’ll update you later…

 

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I get tired–the kind of tired that makes your bones ache.

Sometimes, I get grumpy too.

Hey, don’t we all?

In this ever-winding road of special needs parenting, I find myself often in a place of worry—of frustration.

Nothing seems to go right. Ever.

If there were 2 possibilities–say, vanilla or chocolate–Jack would somehow end up being banana. Even if there was no possible, plausible way for that to happen, it would.

So, you would think that I would be surprised when weirdness happens. I’m not. Not anymore.

I think I’ve begun having out of body experiences. Really. It’s like, I hear what people are saying and I’m standing there looking at myself shake my head and smile, while inwardly, all I really want to do is curl up in bed and cry.

 

My Mother: “What is going to happen? Who will keep Big Child? Shall I bring a casserole?”

My best friend: “What is this kid going to do NEXT?”

My husband: “I probably have to work, so…”

 

 

Jack’s stoma ate his feeding tube. Literally. As in, he is having surgery to remove his feeding tube because no one can get it out manually.

I’m not freaking out. I figure, it is what it is. My child is unique. Very unique.

I get asked all the time…”How do you do it?”

I’m telling you…out of body experience is the way to go. But you can’t tell non-special needs parents that without them wanting to have you committed. My answer is usually the same to everyone—I do what I have to do. You take your kid to soccer and to playdates…I take mine to doctors offices and surgery.

What do you do to relieve stress? How do you manage when the chips are down?

(as I write, I have a cup of coffee, 3 Hershey kisses, and I am really contemplating going to the store for gelato!)

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