Surgery — 5 Minutes for Special Needs



Hi you guys!

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





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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Is it Saturday already?

At times, this week has flown by. And at others, it has dragged on.

Especially from 5 a.m. to about 11 a.m. on Tuesday morning when Tim had surgery on his foot. He plays in an adult soccer league and a week ago Tuesday, he got kicked in the foot. That swift kick (aside from being malicious as he no longer had the ball) broke four metatarsals and his big toe. Hence, surgery and pins in his foot.

He is, as we say, down for the count. And I’ve always known and appreciated all he does for us.

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At least it’s not meth, right?

Guess what I’ve found out about childhood cancer…one of the long term side effects is apparently a raging case of hypochondria.

It’s not hard to figure out, but Peyton is addicted to pills.  Not in an Amy-Winehouse-Betty-Ford-bound sort of way…but I suppose that’s what happens when you take daily medications for thirty months.

Now that we’re done with the chemo, I’m all NO MORE PILLS!


The weeks after Peyton finished treatment was a series of sicknesses. Just normal kid stuff…sinus infection, upper respiratory infection…stuff that might seem major to the normal family but are a walk in the park in my world.

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Days of joy!

For all the worry and anticipation, Peyton got her port out with very little fanfare and no complication.


It was an amazing day for us, emotional beyond belief and full of pure joy at this final huge milestone in her treatment.

It doesn’t mean that we are positive cancer is gone from our lives, but it’s one huge symbol of a cancer-free life.

It doesn’t mean all the fears are soothed away, but we are enjoying the freedom that comes with it.

I wrote so much about the de-portation day on my personal site that it feels like I said everything I could say about it.

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The light at the end of the tunnel keeps getting brighter, yo!

Most people want to start the year with resolutions about losing weight, calling their mother more frequently or keeping their house cleaner.


Our resolution is this: Only one hospital stay this year.

Can I get an AMEN?!

Because we’re already scheduled for it and if all goes well it makes all further hospital visits a non-issue.

Peyton’s scheduled to have her port removed on Friday. No more port means no more fever induced hospital stays to check for infection, no more three day stays for no good reason.  OH, the crazy relief!

They’re going to put her under anesthesia, they are going to cut into her skin, they are going to dig out a piece of equipment that’s helped her get through treatment for two and half years.

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We Got the Funk

I had a whole post ready to go about Peyton’s upcoming surgery later this week.  She’s supposed to be getting her port removed and the post told of my anxiety, her excitement, and all the changes having that port out would mean….and NOT mean.

But in the course of minutes, the surgery has been postponed and we are off to deal with PINK EYE.

No kidding.  Surgery cancelled for pink eye.

I suppose I get that.  With an immune system that’s been supressed as long as Peyton’s, no one would want to chance going into surgery with any sort of known bacterial infection.

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Losing My Religion

When I was younger I was, what my wife refers to as, “a searcher” – one who is looking for a spiritual meaning of life. I was looking for answers to how I fitted into the universe and in what shape or form a god, if s/he existed, might take.

There were plenty of religions out there (including in excess of 30,000 forms of Christianity alone), most telling me that theirs was the one true path. And when I asked how I was to know theirs was right and the others were wrong, it usually ended in either, “because our holy book/ prophet says so” or “you must have faith”.

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