Friday, January 23, 2015

Poop and Pain




Ever gotten on a roller coaster because you felt like you had no choice? Maybe your friends talked you into it and you thought, okay, I can do this. And then you start climbing that hill and you want off. Good lord you want off more than anything in this world, but it's too late. You're already strapped in. You're gripping the rail in front of you so hard that your fingers are turning blue and while your friends are throwing their arms in the air and screaming, you're holding on for dear life, praying the straps are accurately secured, and trying your best not to soil yourself?

That's how I feel this week.

I want off this damn roller coaster.

I've had enough.

My family has had enough.

My son has had enough.

Enough.

He had to spend his sixth birthday at the hospital. And I'm not even gonna try to sugarcoat that. It sucked. And when he figured out where we were going, he did what he does. He screamed a lot about it, and then when we got there, he asked to be carried in, and then when it was time, he pulled himself up, got poked and prodded, and did what needed to be done. That's who he is. He's anxious and scared.....but when the shit hits the fan? He's one tough kid.

And (please excuse my language right now but this is actually very tame compared to the words I'm saying in my head.....) the shit really hit the fan this week. It hit the fan and exploded all over us. I know; I paint a pretty picture. Right? ;)

He did gain weight which was awesomesauce. 
Seriously awesome and much needed.

But we also met with a team of specialists who feel there may be more going on. That means take his already crappy chronic illness and autism and add even more to it. Seriously?!  And the more that may be going on breaks my freaking heart. It has to do with possible swallowing problems and nerve endings and intestines and chronic pain. And I don't even know what to say. Literally.

We are not where anybody thought we would be almost two years into the feeding tube.

We are not where anybody wants us to be.

We are struggling.

We are running even more tests.

We are starting new drugs.

We are considering the option of more feeding therapy.

We are learning that, most likely, he has even more pain than he lets on. 

We are letting that information sink in and it is breaking our hearts.

Breaking.

And then I look at this picture of him that very night. Playing with his calculator that he got for his birthday. His calculator + that smile + the day we had = toughest kid I've ever met.


Y'all?

This kid is amazing.

And y'all?

His mama is tired.
And she needed to vent.
So thanks for reading about poop and pain.

You're welcome for the awesome imagery.

Happy Friday.
Please pray for us.

Wednesday, January 21, 2015

Birthday Boy

Six years ago you came hurtling into our lives with your white white blonde fuzz, your amazing blue eyes, and your amazing ability to scream at the top of your lungs when you sensed the presence of food on the horizon.

Today you still amaze us with your white blonde hair, your amazing blue eyes, and your amazing ability to scream when you sense the presence of food on the horizon. Some things never change.

But boy have you changed us.
You've changed me into a person who better understands the unfairness of this world.

You've changed me from a person who used to think different meant "less" to a person who knows the truth now.

Different means more; so much more:
More patience, more sorrow, more joy, more heartache, more empathy, more tears, more humility, more responsibility, more celebrating the small things, more laughter, more, more, more and then some more.

And even though every day I wish I could take away your intestinal pain, your emotional frustrations,  your social anxieties, and the feeding tube that we have a love/hate relationship with, I know that without those things, you would not be you and I definitely would not be the me that I've become because of the you that God created.

And you and me?
We've got our issues, but dang if we're not a pretty good team together.

So Happy Sixth Birthday My Sweet Boy!

I'm so sorry you have to spend it at the hospital this year, but maybe our birthday gift will be a massive weight gain! Wouldn't that be something?!







In true Owen Fashion,
I hope your sixth year is full of love, animals, and giggles.


Wednesday, January 14, 2015

And then it was 2015.

Long time, no blog post.

Christmas 2014 went by in a crazy blur of family, friends, laughter, gifts, more family and enjoying time together.

The kids enjoyed their two weeks off from school. Todd and I enjoyed our time with them the most of the time. The rest of the time was spent looking into boarding schools...... ;)

We ended our vacation with a stay at Great Wolf Lodge and they had a blast.

Now it's back to the real world of school, work, more school, and more work.





2015 is here.

And as always, we never know what a new year will bring.

Praying it brings you and yours many blessings, and we're especially praying for peace for two families that we personally know are hurting right now. Praying God brings miracles and healing hearts.

Happy 2015.