Sunday, August 25, 2013


The crystal glass has shattered into a million tiny shards....

Theodore has been doing so well. I can't even remember the last time he used his vent. He's getting big, he's learning all sorts of new things, he's growing up.

But lately.... he's been coughing. A lot. Sticking his fingers in his mouth, gagging himself; at night he coughs and coughs and coughs and coughs. And that's 'it' for me. That is what makes me feel like my body has turned inside out and is shot in all directions like a shattered crystal glass. 

It only takes one. One coughing spell. One incident of gagging and me trying to stop him from continuing. One minute of fighting sleep from coughing. It's just the right tool used in just the right spot to tap the glass and ruin it. 

It's a nightmare. It's what causes me to completely lose my composure. It brings me to my knees in agony. It keeps me from seeing any good possibility within days because this one incident has ruined it all. Anxiety shoots through me and I act ridiculous. It literally makes me wish I could go to bed and not wake up just so I don't have to deal with it anymore. Any and every bad situation I can think of is all I see. There is no half full glass. There isn't even a half empty glass. There is no glass at all because it's broken all over the floor. 

Maybe that seems dramatic. I'm not saying it's pretty or right. I'm just saying it's the way it is. There are a lot of dark corners in my heart, I'm finding. Even my son, whom I love desperately, can cause me to see only red in an instant because of something that he can't control.

Yeah, I know it's not a normal situation. I know we deal with more than the average person (maybe), I know that it's not just simply one coughing spell that we are dealing with. But I'm still not proud of the way I act- it doesn't excuse me from dealing patiently and lovingly. And quite honestly, it's a pain in the butt. I really don't want to get anxious and uptight with my mind running a million miles a minute thinking about how our entire first week of school is now going to be awful because of one cough. 

I'm thankful that those dark corners are being exposed and hope that Light can be shed there to stay. 

The mouth speaks out of that which fills the heart. Matthew 12:24

The heart is more deceitful than all else and is desperately sick. Jeremiah 17:9

Heal me, O Lord, and I will be healed; save me and I will be saved for You are my praise. Jeremiah 17:14  


Wednesday, August 21, 2013


Yeah, I made it up. It's okay. Just go with it. 

Our final week of summer is quickly coming to a close and it hasn't exactly gone the way I was hoping. We've had more nurse staffing issues lately than we have for quite a while which has made our last week be quite uneventful. 

Maybe that's a good thing. 

In better news, I forgot to take the trash to the end of the driveway today and only remembered because I saw the truck when it was next door. I didn't have enough time to get it down there and figured another week would just have to go by. But that wonderful trashman, whoever he is, actually walked up my driveway and got it. 

Bless you.

I had so many things on my mind and now can't seem to produce another productive thought other than the prior two. 

I should probably just leave it at that. 

I'll leave you with just a couple shots of the cute church next door. Because it's so pretty when the sun hits it just right. Of course, you want to make sure you're ready and able to get outside when the sun is hitting it just right or you end up a little past its prime like was the case for me. Day late and a dollar short. It's really my motto so I guess I could have thrown off the balance of the universe had I actually been out there on time. 

Wouldn't want to do that.   

Sunday, August 18, 2013

Mason jars

I've had this jar sitting around.

Just sitting around filled with doubts and fears and sorrows.

Reminding me every time I sit down what all those are.

Those things have been in that mason jar... in my heart... for too long.

So, yesterday, I set those things on fire.

"The removing of those things which can be shaken, as of created things,
so that those things which can not be shaken
may remain..."

"...Therefore, since we receive a kingdom which can not be shaken,
let us show gratitude,
by which we may offer to God an acceptable service
with reverence and awe."

"For our God is a consuming fire." - Hebrews

All that jar represented was created things.

Real things, yes.

Hurt and sadness and doubt.

Things, if I had my choice, I certainly wouldn't have chosen.

But all meaningful. Not unnecessary. Not meaningless.

All working together so that the unshakeable can remain. 

"Of course you can't see what it's doing! Don't look at what is seen." - John Piper

Because what is seen is all created- all momentary- all shakeable.

It's the unseen that is not shakeable.






Perfect Love.

Those are the worthwhile and not able to be created by human hands.

Those are what will remain.

So I took my mason jar filled with my heart and I emptied it. Allowing there to be room for what really matters. 

And I replaced my "I'm not crazy" lid with one of lasting value; one that shows gratitude.

And the first thing that goes in there will be thanks for that last jar. 

Thanks for the removing of the shakeable. 

Thanks for giving me what will remain. Forever.

Hopefully I'll need more than one of these jars. 

Saturday, August 17, 2013

Happy Links.

My close personal friend Ann Voskamp (just kidding... she's my friend but she has no idea who I am :) ) led me here today.

Check out these two pages: 

Welcome to Holland is short and sweet and insightful.

Indispensable is a little longer and beautiful and totally worth the read.

It all made my heart happy and feel a little less alone.

Monday, August 12, 2013

One hour.

It's not even 9 a.m. 

Theodore has already:

knocked over his humidity bottle spilling it

come undone from his tubes

chewed on a vinyl tile

knocked down a stool

broken a book.

He's been out of bed for less than one hour.

Saturday, August 10, 2013

Planes, trains, and automobiles.

Since the kids have been home from camp I haven't had as much time to devote to anything that isn't related to them. But we are starting to get back into the swing of things. 

Yesterday we had a nurse and got to take the other three to the movies. For the girls it was their first time. They, obviously, sat in the front row because how else can a kid go to the theaters without sitting in the neck breaking front row? 

We saw Planes. The kids have been waiting to see this since the first preview came out. And it was lack luster. I don't think they realized it, but it was not nearly as good as Cars and took about 20-30 minutes to get into it's groove. Then, even at that point, it was only 'meh'. But this isn't a movie review blog and the important thing is that the kids THOROUGHLY enjoyed themselves. If you're a parent though, I'm just letting you know......

Theodore stayed at home with the nurse and pretty much drove her crazy because he wouldn't take a nap. Welcome to my world. 

He's been, I think, fighting a trach infection and has been a little less than pleasant lately.

We're all enjoying the last few weeks of summer before *I hate to even say it* school starts. 

Just saying that deflates me like a pin in a balloon. It kind of makes my insides die a little.    

And, you know, I thought after 10 days at camp where the kids had little to no technology they would come home ready to continue in their use of imagination and creativity. 

I don't know what I was thinking. Keeping them off of anything that involves a screen has been like pulling teeth. But today we shall try again because we all keep trying like fools! 

Friday, August 2, 2013

A look back the not so distant past.

These are the days that I can't believe we survived.

The days where we could hardly turn around because of one thing. Well, two things, really that when combined make for a mess.

Tubage and rolling.

The rolling days. The days I generally refer to as living hell. And, man, he was fast. 

Thankfully those are behind us and we are quickly approaching the walking days. The only problem is that I'm still recovering from the rolling days, I don't think I'm ready for the walking days yet.