How to Hold it Together When the World Falls Apart — 5 Minutes for Special Needs

How to Hold it Together When the World Falls Apart

by Heather P


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!)

Email Author    |    Website About Heather P

Heather is a mom of two, wife, and nurse educator doing what she can to save the day! She lives in Orlando where she is routinely spotted driving while singing ABBA--all on a mission to advocate and educate!

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1 Jo June 8, 2012 at 2:04 pm

Oh Heather I can only send hugs….
I can relate to the out of body feeling. I have been there several times…
I think you go into auto pilot, doing what you have to survive..
I hope you got a double gelato.

2 Heather P June 8, 2012 at 4:37 pm

I ate the whole pint of it…it was caramel cookie crumble in coffee gelato. It was worth it. 😉 xo

3 politicaljules June 9, 2012 at 12:59 am

Important life lesson learned…. Normal is just a setting on the dryer.

I ask God to meet me in the laundry room. I supply the oreos, and the vodka with plenty of tears.

I am usually late because wrestling the super glue and saving the dog sometimes comes first.

4 Heather P June 10, 2012 at 9:09 am

Julie! That’s funny! My best friend meets me for lunch (with all our kids) on Fridays. I’m always late. She always has a glass of wine waiting! 🙂

5 Maggie June 10, 2012 at 8:28 am

In our house, we live by Marshall Law instead of Murphy’s Law (Marshall being my maiden name). Things just don’t go wrong they often go in the most bizarre directions, that’s our life! If I’m not laughing, I’m crying! You’re good! I eat the whole bag of kisses (there’s no stopping at three) AND the gelato!

6 Heather P June 10, 2012 at 9:10 am

—(fist bump)—-

We’re in this together, Sister!

7 Mary S June 10, 2012 at 1:40 pm

After many years and lots of chocolate and ice cream,I can definitely say that life with “normal” children must be really boring compared to our lives.I love the fact that my 12 yr old son will still hold my hand in public and my 18 yr old doesn’t care who see’s him hug his Moma.Having a child with special needs means it’s never boring at my house and I still get to experience things my extended family no longer have with their children.Your life,like mine,would really make a interesting book.My thoughts and prayers are with you & Jack during his surgery.

8 Heather P June 11, 2012 at 10:10 am

Thank you my dear….and I truly, truly, couldn’t agree with you more!

9 Debbye June 14, 2012 at 2:27 pm

Wow. The out of body experience analogy really hits home for me. I have felt like that SO many times, and never even explained it to myself in that way. Knowing that I am not the only one who “copes” in that manner (and by indulging sometimes in chocolate-my preference is banana chocolate chip muffins from Costco) gives me piece of mind.
Hang in there is all I can say!!!

10 Heather P June 15, 2012 at 2:04 pm

Banana chocolate chip muffins at Costco….(gotta run!) 😉

11 JJ June 21, 2012 at 2:46 pm

Thanks for sharing! I love reading a book outside to calm myself down, especially books that remind you how lucky you are in life to be where you are and do what you do. Of course, chocolate helps, too!

12 Heather P June 28, 2012 at 3:38 pm

and potato chips…

13 Kara June 27, 2012 at 4:53 pm

My Jack is the same way! When he was in the hospital during his first three months, he had his stomach repaired three times (after a fundoplication and insertion of his g-tube). The surgeon says, “Every year, there’s one kid who gets all the complications. Guess what?”
I’ll join you in that gelato!

14 Heather P June 28, 2012 at 3:38 pm

Cheers! 😉 (maybe it’s in the name?!?!?!)

15 Jo October 26, 2012 at 3:46 pm

Sorry to hear this Heather. Hope you get lots of gelato to see you through.

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