Monday, June 6, 2011

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.


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.

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:

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


  1. We will be praying for everybody!

  2. Let the praying be ceaseless, the time at ST. Joseph's be blessed with success, the time away from family melt away as quickly as possible, and the love and support surrounding you to be absolutely HUGE!!!!!!! Already is :D Our prayers are mirroring yours and are a reflection of God's faithfulness in all our lives.
    YOU ROCK my world and the world of my precious Owen. We will love on and care for your 3 precious ones at home and assure you unwavering support throughout! Love you!

  3. Thanks for letting us bloggy friends know exactly what his diagnosis is. It helps us to appreciate his milestones with you!

  4. So excited to see how God is going to work in your life Owen!! (and Rachel too!) Love you both :)

  5. Thanks for sharing. It is a testimony and an encouragement for people like me who struggle with my own (burger eating) kids. :) God not only made Owen exactly like you described, but he also made you exactly as you are....the perfect match for him. A mother who loves her son so fiercely that she will give up her life for him. He is so blessed.

  6. You know me so well. I was just in the process of trying to come up with something witty when you went and called me out at the end of the post. Man, now the pressure is on. Bring it.

  7. Ah, first I want to say I love you and you are an incredible mommy. I know how hard it is when you have a special needs kid and people give advice, without understanding the full spectrum of things. I will be praying and checking for updates frequently!! There is a song right now- I'm sure you've heard it, that is especially meaningful to me right now. If you haven't heard "Strong Enough" by Matthew West, check it out: I love you!!!

  8. Thanks Everyone! Appreciate the prayers and support more than you can know.
    And PS - Allisen, I'm sure you're up to the challenge. :)

  9. you really are a great writter, even if they are mostly run on sentences. I too, cringe when i get advice in the store. Like really, you think I didn't know that my child was standing in the cart????? Good luck lady, and little man! We will keep you both in our prayers.

  10. My husband's Aunt Joan lives in Jersey. I'll tell her to bring you guys a meal like the one you brought me after my surgery. I admire you for your attitude through what HAS to be so, so difficult. I won't give you any advice. You've read my blog. You know I have no idea what I'm doing. You're all in my prayers!