The Longest Post Ever in Which I Bear My Soul

or something like that......

Any mother can tell you that when you have children, especially while they're still babies, it's like the world got a personal, handwritten, choreographed invitation to give unsolicited  advice to help you raise them.

Seriously.

There's all sorts of advice given - from nursing to potty training to homeschooling to public schooling to 'how dare you let them ride the bus' to napping to fill in the blank. (And as an aside, after three babies, I've learned that any time they cry for a prolonged period of time in public, all elderly women within a five mile radius will stop you to tell you that your child is hungry. Starving in fact.

I think it's a rite of passage women have to go through before you can get your geriatric shoes or something. I can't wait until I bug the crap out of young mothers who fed their babies three minutes before said baby started screaming in public.....because they were gassy or poopy or didn't burp well or wanted to sleep or just plain old wanted to ruin that mother's trip to Target.)

And I know I'm using run-on sentences.

Sometimes that's just fun.

Anyway - the point of this post?

I got a sweet suggestion from a blog reader and friend who said, 

"I read your blog and I'm praying for your little boy, but it would help if I knew more of what's going on with him. Why is he going to this hospital in Jersey?" She also suggested that I could start a private blog just for people to follow about Owen's struggles while we're gone if I didn't feel comfortable putting it on a public blog.

Hhhhmmmmmmmm.

Okay. Good points.

And I considered the private blog idea except that this blog is about my family.

And Owen is a part of this family, which means his struggles are a huge part of our everyday life.

And this trip affects his whole family.

So I'm not putting this out there as an invitation for criticism on where I'm taking him, or what tests I've had done, or if I'm meeting his needs, etc. Believe me - nobody can be more critical of those things than myself, though some people have tried.

Owen suffers from several chronic disorders. He has Eosinophilic Esophagitis - also known as an allergic esophagus. (In a nutshell, this means bad white blood cells build up inside his esophagus and cause inflammation and irritation. And certain foods trigger the reaction as well.)  He also has gastritis which is inflammation of the stomach lining, and he has bouts of colitis, which is inflammation and irritation in his colon. He's allergic to most foods. He's had two surgeries to correct problems with his larynx, five endoscopies, one colonoscopy, six months of speech therapy and 14 months of feeding therapy. He is on four strong medications with varying side effects. All these issues together make eating very painful and difficult. He also has blonde hair, blue eyes, a sweet but stubborn spirit, adores his Isaac and all animals, and loves to sing the Itsy Bitsy Spider. Point being - none of these things define him. It never feels good to hear other people (mainly doctors) put a label on my son. He is exactly who God created him to be. No matter how scared I get about his future, I am secure in that fact. He will be exactly who he is meant to be and I hope that I will mother him exactly as God desires.

Why New Jersey?

St. Joseph's is a specialty clinic that focuses on feeding and swallowing. They already have goals in place for Owen to reach and have allotted five weeks to reach them, with the hope that he will reach them sooner than that. Once he reaches those goals, we will come back home and continue to work with him at UNC with the ultimate goal being solid foods!! Seriously - the day this kid eats a burger, we'll probably buy him a pony or something.

As we prepare and write to-do lists that are longer than my arm, I already see God working. For example, Owen is on a special formula. 4 small cans cost $139: 

Thanks to UNC giving us samples, we've only had to pay for it twice. Wow. So I called St. Joseph's to see if they provide neocate samples? Nope. So I called one of his UNC docs on her cell phone because she's cool like that. She answered right away because she's cool like that too. She called tonight - we're meeting in the CFA parking lot tomorrow night. She has sixteen cans for me. 16!! Hellz to the Yeah. This formula is Owen's main source of nutrients and calories. God is so good.

So what do I want you to pray for?

Let's think big here. 

Let's go strong or don't go at all.

Let's pray for no more allergic reactions like this:

(Because if that's what it looks like on the outside, I don't even want to imagine what his esophagus is feeling like on the inside.)

Let's pray for no more of these:

Heck, while we're at it, let's pray he eats one of these:

 

besenretail.wordpress.com

Let's pray for worries of finances and outcomes and distance from family to fade so we can focus on one thing - eating and healing. Okay that was technically two things. But you know what? God is bigger than all of this. And He can do things in Owen's little body that doctors and medicines and therapies can't do. So let's pray for those things.

Because I'm here to tell you, when this kid feels good, he shines:

 So thank you friends for joining us on this journey.

And while I'm not looking for criticism, unless it is actually constructive and coming from a place of love.... feel free to leave comments or verses or funny remarks (Allisen) for me and Owen to read at night.

We leave in five days.

"No, in all these things we are more than conquerors through him who loved us."

-Romans 8:37

Weekend Update

Get ready for an onslaught of pictures and boring information.

:

After a very bad week with multiple appointments,

Owen's smile came back yesterday.

Yay.

He also got to pick out a new distraction toy at Target.

(Distraction toys are used to help motivate him to eat.)

I wish I needed motivation to eat. I need something to distract me from overeating.....

He loves this new toy so much that we don't have the heart to only let him have it at meal times. His name is Horsie. Very original, I know.

Todd bought a lot of new nintendo games off of Craig's List.

Isaac was obsessed with them.
And is now obsessed with bugging me to play them constantly.

The diva had a big weekend.

First and foremost, her good friend, Toe, is back.

Those of you who have been around her whole life may have been missing Toe and worrying about her. Worry no longer. She made an unexpected appearance this week to help Emma Grace clean up her room and to play with toys, etc. We're all excited she's back.

(For those of you who have not been formally introduced to Toe, she was EG's imaginary friend from about 18 mos - 4 years of age. She is the big toe on her right foot.)

Creative, I know.

As if that wasn't enough excitement, the diva also got to go to a butterfly birthday party at the Museum of Life and Science in Durham. She had a blast.

The museum was great and all, but there was a cage full of these in the room of the birthday party, so I was staving off a nervous breakdown the entire time.

I hate these. And I'm scared to death of them. I once stood on a toilet for an hour waiting for Todd to get home and kill one because it was on the floor and I was scared to get down.

And to top off our weekend?

Owen's napping so EG and Isaac asked to play outside.
When I looked out there, this is what I saw:

Yup - eating a snack and reading the dictionary.

Who doesn't do that on Sunday afternoons?

Nerd Alert.

Oops.
I mean, aren't they cute?

Happy Weekend.

Epic Fail

What's the worst wake up call ever?

Getting this sweet face next to yours at 5:45am with tears running down it:

"Mommy, she didn't come."

A very groggy me: "What? Who didn't come?"

"The tooth fairy. I left my tooth there and she didn't come."

Epic Fail.

I'm sorry diva.
Thanks for being a trooper.

One day your mama will get her crap together.

Definitely Safe to Say

That today was not a good day.

When your child screams all afternoon and then still has tears rolling down his cheeks after he's fallen asleep on you at dinner time.........

Nope.

Not a good day.

But we've had a lot of not good days around here,

so I know that tomorrow could be better.

It often is.

In other news.....

We often worry that Owen's health issues will negatively affect the other kids.

But tonight proved otherwise, because while Owen did this:

(screamed through Todd's attempts to cheer him up)

the older two crazies were having a dance partay in the living room.

Who doesn't wear their brother's Easter basket on their head for dance parties?

Regular hats are so last year.

 

Saddle Up for Summer

Howdy.

Isaac graduated from preschool on Friday.

It was a western theme.

Not sure why...... I guess that's just how we roll in Knightdale.

And I reckon I was that mom. 

You know - the one who sent him to school in an orange shirt when he was supposed to be wearing red, white, or blue. 

You know - the mom the teachers are cursing while they scramble to try to find something that will make do.

Yessiree. That was me.

I reckon I was also that mom who was proud to see her little boy standing up on that stage with that there "diploma."

Yup - our days of school are quickly coming to an end.

Summer is here for Isaac and right around the corner for Emma Grace.

Our favorite afternoon activity of running to the bus stop is quickly dwindling until next August.

Swimsuits and towels are out drying on the deck and running just got a heckuva lot sweatier.

Our favorite moment:

Isaac literally counts down the minutes until his sister gets off that bus.

Next year Owen and I will be greeting two of them at the bus stop.

Crazy Weird.

So in keeping with our western theme:

Happy Almost Summer Y'all!

Detour

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
-Jeremiah 29:11

I keep coming back to this verse.
Over and over and over.
And often, I replace the word "you" with "Owen."
Because I know God has plans for him.
Plans to prosper and not harm him.
Plans to give him hope and a future.

So as I make plans I don't want to make,
as I make plans to leave in two weeks and travel 10 hours away from the rest of my family,
as I make plans to watch Owen go through five weeks of intensive therapies and medical tests,
I reflect and repeat this verse over and over and over in my head.
It's like a broken record running through my brain.

This was not my plan for my son.
This was not my plan for my other two kids over the summer.

But I'm trying my best to trust His plan.

It's not always easy, but I know He plans to prosper and not harm Owen.

And I'm ready for some prospering.

Bring it.

My counselor (yes, I've been going to counseling) suggested using this blog for support in the coming months.
So I'm going to step out of my comfort zone and use it as he suggested.

I will use this blog to keep my family and friends posted on Owen's progress.

I will use it to vent.

And I hope that I will use it to share many victories.

So blog readers and prayer warriors, let's get this prospering party started.

Let's pray for the doctors and therapists at St. Joseph's.
Let's pray for my older kids as they adjust to five weeks without Mom and brother.
Let's pray for the awesome friends and family that are stepping in to help us out with child care.
Let's pray for my husband and I to have peace about all this.

And let's pray for this guy.
He has no clue what he's about to go through.
But God made him tough.
And God has plans to prosper him and not to harm him.

God has plans to give him hope and a future.

And for that, I'm eternally grateful.

Celebrate, we did.

A long long time ago (3 days)

in a galaxy far far away (or in this house)

Isaac joined the evil forces of the dark side to celebrate his fifth.

The rebel forces ate pizza, played games, ate cake and ice cream, and went home pumped up on "yoda soda" and sugar.

Isaac had a blast and got to spend time with both sets of grandparents as well.

Thanks everyone for helping Darth Vader celebrate his fifth birthday!