Hope

We're coming around.

The news  and chaos are settling into our bones and our emotions and tears are slowing.

We have hope again.

This young girl is excited that her new school will still have a running club.

This little guy is on week two of his new medicine and this morning ate a cereal bar without complaint.

Without getting out of his chair.

Without crying and clearing his throat from pain.

We dare to Hope.

And this one?

He's our go with the flow guy.

But there have still been a few tears along the way.

And then yesterday he said, "I'm pretty sure I'll make some new friends at my new school next year."

I know you will, bud.

You're one friendly dude.

Hope.

Can't A Girl Be Bitter Around Here?

Dammit People,

I am trying my hardest to be a bitter, cynical, angry person here. 

And you people are making it hard with all your freaking kindness and support.

Enough is enough.

Let's back it up for a minute, shall we?

Those locusts we were waiting for?

They came.

In swarms.

Here's what happened in a nutshell and in no specific order, because it is honestly a blur in my head, which is either due to severe confusion, too much wine, or both?

Long story shortish - 

Owen's health is not getting better so our awesome team of UNC docs said we should probably just mosey back on up to the awesome team of doctors and therapists at St. Joseph's in New Jersey for another five weeks of intensive feeding therapy. Um yay? We start May 4th.

They also decided he needed to start another new drug. A big gun drug that we are not super comfortable with that has to be given through the tube three times a day at exact times. That's a lot of trips to the school until all the paperwork goes through and they can administer it themselves.

Oh and also, during all this, Owen decided biting was cool.
We think biting is not so cool so we're working on that.

After being hit with the St. Joseph news, and after much prayer and consideration, or like an hour where we freaked, and I do mean FREAKED THE EFF out, we decided to put our house on the market.

After deciding to put our house on the market to better afford our family's needs, we decided to buy a smaller town home nearby.

After spending a lot of time researching that town home and praying over that decision, or like an hour where we freaked, and I do mean FREAKED THE EFF out, we put in an offer, it was accepted and we were told we would close on March 31st. That's three weeks from yesterday.

And those three children that live here?
Well, quite understandably, they are freaking out as well.
Mucho Meltdowns.

So, I have a right to be bitter, right?
Can I get an AMEN with another glass of wine please?!

Wrong.

You see, I am a wee bit stubborn, but I have learned that God is a wee bit stubborner.
No, "stubborner" is not a word.
I do not care.

Because during all this, I turned my head to the sky, shook my fist, (please please please tell me you're imagining Scarlet here.....because I totally am.....) and said "I'm so done with you. I'm for real this time, God. I am so NOT talking to you right now!"

He said, "okay."

Me: I mean it, God. I'm done.

Him: Fine, but I'm not done. Watch this.

Me: Oh, bring it.

And He did. Because, like I said, He's stubborner.

When I was freaking out about Owen having to go to New Jersey, He used a group of six friends to start a fund for us to help with finances, and I can't even tell you how much that means. Did it mean our pride took a hit? Yes. But more important than our pride, we feel so so so loved and supported. And the costs of the trip? They're covered now people. Covered. Do you know how awesome that is?!
Financial Weight? LIFTED!

And in the midst of all of this? When I had two exams, He used a friend to encourage me and send me her notes and keep pushing me not to quit on this whole school dream. I don't want to quit, but when life feels this hard, sometimes it's hard to hang in there.

And when we needed the house to go on the market? He sent an army. Like literally, at least twenty people showed up and worked their tails off and made our house look amazing. We did not even know they were coming.

Me: Well crap, God. you're making it a little bit harder to be bitter. But don't you worry, I'm still going to try. 

His response?  Watch this. I'm bringing my A Game now.

The house sold in eleven hours people.

ELEVEN HOURS.

And the people buying it? They included a letter in their offer saying they were praying for our family and our transition. They said they wished us blessings. I mean, literally, God could have written that letter. He may as well have. Heck, He probably did.

Boo-Ya!
"A" Freaking Game

So I give up.

I'm waving the white flag of surrender.

I cannot argue with that; I mean, how the heck do you argue with that?!

That's what God does. He uses people. He doesn't give a crap if I'm mad at Him because that's not His gig. His gig is pursuing us, pursuing me. And He put on a full court press. He used all of His best tricks to pursue me in the last month. He used you. And it worked.

So from the bottom of my heart and soul, I thank you.

I thank you for your prayers.
I thank you for your donations.
I thank you for literally scrubbing my house with. a. freaking. toothbrush.
I thank you for listening to me.
I thank you for picking me up and dusting me off and helping me see Him again, helping me see HIS love again THROUGH you.

I needed that.

Is everything just roses and rainbows now?

Not really. Unfortunately, this is real life, not a hallmark movie.

We still have to move.
We still have to go to St. Joseph's.
I still have to deal with anxiety attacks through all this.
The kids still have to meet with a counselor to try to help them through all this.
Todd still has to ignore his pain by making a butt load of spread sheets.....and then making more spread sheets about how many spread sheets it will take for us to figure this all out........

But I am starting to talk to Him again.
There's still some anger, but I think when your kid is sick, there may always be a little bit of anger?
And maybe that's okay?
Maybe that's real life?

Maybe it's baby steps back to that place of complete trust.
Maybe I'll never get there, but I do know now that He will never stop pursuing me.

Full Court Press, People.

Beware.

When He brings it, He brings it.

As for everything that is still headed this way?

PS - Mom, aren't you so glad you gave me my book back senior year so I could quote Scarlet O'Hara years later on my blog?

Sister, Sister.

We're waiting for the locusts.

Literally.

After biopsies, losing a g-tube, a new diagnosis that is yuck, a night in the ER, and now possible infection, I'm just waiting for the next step of the plague.

And when you're waiting for locusts,

there's one person who can make you laugh like no other and you wish that person was sitting in the same room with you making inappropriate jokes and loving you unconditionally no matter what you say or do. And you say a lot of crap that you would never admit to anyone else. And she never judges. Or if she does, she does it in a quiet and loving way....... ;) She wakes up and texts you in the middle of the night and sends funny memes and just somehow always knows what you need to hear. 

Gah!

I miss you so much right now. sister! 

That is all.

Church. And Magic Mike.

Yesterday morning I sent the kids out to get buckled while I grabbed the last of our things and made the mad dash out the door for church. This is a weekly rat race of us attempting not to be late on Sunday mornings which I personally think is only amplified by the fact that we live one mile away from church. You see, when you only live a mile away, you constantly think you have time to do one more thing like unload the dishwasher real quick, throw some mulch down in the yard, write a novel, or figure out how long Bruce Jenner is going to let his hair get before he publicly announces that he would, in fact, like to be a woman.

Anywho - From inside the house - I hear Emma Grace screaming. I walk out to the garage to find her in the back seat covering her eyes and yelling at the top of her lungs.

Apparently the boys thought it would be a great time to practice their Magic Mike Routine in front of their sister. Both had their pants down and were showing her their booties (and probably other parts as well....) I didn't even know they had a Magic Mike Routine.

They were in prime position for discipline from Mom.

And then I said what we probably all say at some point on the way to church:

"Now ZIP up your pants and SIT DOWN! Dang it! You're making us late for church!"

And that's just how we roll around here some days.

Yes, we are obviously so proud.

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.

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.

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.