Elliott

Yesterday we headed to Atlanta to Emory Children's Health Center. We encountered very little traffic,and found Emory fairly easily. That alone was a miracle.

Elliott's appointment went really well. The doctor we saw had already reviewed Elliott's file, and had consulted with other doctors. After meeting with us,and thoroughly evaluating Elliott, he believe's he knows what Elliott has.

Elliott has been unofficially diagnosed with Juvenile Idiopathic Arthritis. There are different classifications, Elliott's would be the systemic arthritis. I say "unofficially" because we are giving him a trial medication for 2 weeks. If it helps, (will know not just by him feeling better but also by having labs to check his WBC and inflammation) then we will know that in fact is what he has. We are thankful for answers, and that the pediatrician, oncologist, neurologist, infectious disease doctor, gastroenterologist and rheumotologist agree that his symptoms match this diagnoses, and not a few other things that had been considered. We might have to add a cardiologist to that list in the near future to make sure he does not have any inflammation in his heart.

If the medications work, we won't have to go back to Emory until October. We are praying this is the answer for Elliott. He has been in so much pain and discomfort, we'd really like for him to have some relief.
Thank you for your prayers, love and encouragement. We are so blessed to have a community of family and friends who have done so much for our family.

For those of you who have just gotten to know Elliott, here are some of our favorite pictures of him. Please continue to pray that this is the answer we have been searching for, and that the anti-inflammatory medications will help him.

I'm off to pack! We ARE going on vacation to the beautiful South Carolina beaches of Hunting Island. We are so excited, and thankful to have some much needed time away as a family!
Be prepared to see a lot of this....on this blog next weekend!

Photo Credit

Hurry up and wait.

Nothing has really changed for Elliott. We head to Atlanta to Emory Children's Hospital on Friday. It can't come soon enough, as he has been pretty miserable. The Rash gets worse, then will get better,usually dictated by what his temperature is. He complains his bones hurt. Last night I heard him whimpering in his sleep. When you ask him what hurts he points to his joints, like knees, elbows,etc or says his head hurts (then I know it's a fever). Tylenol, Motrin and Benadryl at night keep him comfortable. I've let myself research, and study up on what we could be facing. I need time to process, I like to be educated before I'm asked to make decisions. We were told to write out all of our questions. I've been working on that.

Basically, it's the whole "Hurry up, and wait."

Like hurry and get all of his medical documents to Atlanta, yes. Every document ever, they needed it. That took a few days.

Then the "Call us right back" message....and when you do your put on hold for forever.

It's been rough. We are ready for answers. I've accepted the reality of our situation, and am ready to tackle it head on.

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In the meantime, we are staying busy with anything we can think of. The weather has been soooooo beautiful here. I'm loving that it's September and still 80+ degrees. This southern girl missed the warmth. We've been on walks or bike rides every day. Elliott usually opts to ride in the stroller or wagon. He gets tired easily. He tried to ride his bike yesterday, made it about a block, and couldn't do it. That was sad, he loves riding usually. Thankfully we had my sister in law with us, and she had the wagon.

We've made marshmallow people with toothpicks. They all loved that.
 (If  you want to see pictures, I have Instagram my name is bnyhle31...follow me there!)

Of course we've done school, and special projects with that.

Daddy brought home huge boxes from work last night, since our living room is empty, I decided to make the kids a huge box fort. He is bringing home more tonight. My sister in law and I have been planning up some sweet designs. It will be a magical box fort, with Christmas lights,and her amazing art work gracing the walls. Hey, when your stuck at home, you gotta do SOMETHING!

(What I'm thinking)

We are going to have the most rockin' box fort ever. It takes me back to my childhood. My dear friends Dad made them box forts in their basement. But, they were not your average box fort. Oh no! He designed amazing castles with drawbridge doors,and our own little rooms, with door knobs. Or a two story box maze. They were fabulous. We dressed up in petty coats and were princess' one minute, and the next we were secret spies. I want to create that for my children, and can't wait to get started on the design tonight!
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We visited a church down the road on Sunday. It was nice, the kids liked it. The pastor preached a great message. One of those where you sit there thinking "Am I the only one in here, cause I think your talking right to me". I thought for sure I'd start crying when I heard the intro to the last praise and worship song. But I didn't. I was surprised by that. I'd say my emotional state as of late has been "numb". Too raw to cry. I'm thankful I didn't loose it, as we had all the kids sitting with us in the pew. We slipped out the church, not too many people stopping to talk to us. That's a hard reality. We are the new people, and it makes you miss your  church family. People hugging and laughing together, it's not that they weren't friendly. They were, but they have their friends, and wanted to catch up with them. And it makes you miss your friends that were your "pew buddies".

 It will happen, I know that. But, it's exhausting to "put yourself out there". I mean, due to our current state, (you know the  rather unbelievable reality) you don't want to put yourself out there to meet new people, because small talk just seems so dumb.Kind of like this:

And you don't want to dive into the realities of your life and tell them everything, cause your pretty sure they'd think you've got the plague and run. I mean, I probably would.

Well, I would have before.

 I am not the same person I was before all of these trials. I hope no one would hesitate to tell me whats really going on in their life, and know that I would not find it unbelievable, or jump to judgment.

I hope I'd say a: "Oh girlfriend, can I pray with you?". Hug their neck and just be there.

 I hope one day I can be that for someone in similar circumstances. Because when your in the trenches, you don't need people saying "they've been there", or "you'll survive", or "well if you would have done this, that wouldn't be happening".

You need someone to come along side, say a "Oh girlfriend" give you a hug and say "Let's pray together". Because really, only God can help. Friends are just there to point you to Him when it's so hard to see His hand, and love you through it. I mean, aren't we supposed to do that for everyone...love them through life? So, if your reading this, and hurting, and life is hard, please know I want to say "Oh girl friend!". Throw my arms around your neck and ask if I can pray with you. And I want to LOVE you through it. Because we will get through it.

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And then, I'd crank this up, and we'd dance till our bodies ached. Because this is the good life, and if we really think about it, what do we have to complain about?!?!

Craigslist.

Daily I check craigslist.

I know, it's kind of like knowing the fridge is empty, but opening
 it over and over to see if any thing looks good.

I always check the free ad's first. It's ALWAYS beloved pets.

People giving away their dogs to "Loving homes" of course.

It's disturbing to me what people will give away (A loving animal)

And what people want money for. (Hideous couches)

(apologies if the person that posted this on craigslist ever reads this. If you want this beauty and it's matching chair it's listed today, for a steal of $95 dollars!)

I've learned key words like "Vintage" means "Butt Ugly"

And "Retro" means "should have been burned"

Oh, and lets not forget what the "Getting a divorce" really means:

"Call me, and I'll ask you out, sight unseen".

Yes. It did happen.

I nicely said "Oh, well, now I know why your wife left and your getting a divorce!".

Really it's been a comical relief for me. Some stuff is just down right hilarious.

Other times I think:

 "Man, I may not have furniture, but maybe that's a blessing in disguise, cause It'd be awful to be strapped with a "Vintage/Retro" couch because "I'm getting divorced"."

 Life could be worse. Much worse.

Mending...

I have read Angie Smith's blog for a long time. I was pregnant with our youngest, when she was pregnant with her precious Audrey. God has used her writing in so many powerful ways in my life. Her newest book "Mending" will be available to purchase here and here . I could so relate to her post on Mending. It was as if she was talking directly to me.  To  celebrate her new book, I decided to participate writing my own story of mending.

The last two years. It's been two years.

 At times I can't believe we have endured all we that we have. So much loss, heart-ache, struggles and pain. I had been doing okay, staying strong, though many times I've been weary. I pushed on.

 Until three days ago.

I realized one afternoon while cleaning what little we have in our new house, that I was doing it again.

Putting my trust, security and faith, in what I had.

You would think I'd had learned all that by now. I mean, it's been TWO years of this.

God has been stripping my securities away.

Family, Friends, a Home, a Church, a Steady Income, our Safety (1 robbery,and 1 attempted on Friday night, two different houses).

And the last straw, my Child's Health.

I broke down, laying in bed next to my baby boy, I sobbed.

All the emotions of the last two years let out as I was gasping for air.

 The emotions have come on in waves before, but I always whipped out my "life boat" made of whatever I could piece together that wasn't a mess.

On Saturday, I had nothing. And I was being hit by a tidal wave.

I sent out a "SOS" to my dearest friend. Or better, a "PFM"...(PRAY FOR ME!)

I was falling apart, my pathetic life boat with the little white flag hung high was falling apart.

In that moment, I was all out.

In that moment, I felt God tell me.

"I've brought you out to this point in the sea for a purpose".

My response back?

"Let me see it, I want to see that beautiful land again, with pristine beaches, where my babies are playing, and no one is sick, and I don't have fear of a tidal wave, where only peace washes ashore and we bask in the Glory of it all."

"You can't get there, until I take you through this".

Peace washed back over me. And I realized in that moment, that I have these moments, in this storm.

Where time feels like it's standing still.

To Pause, to Praise, to Pray.

To Choose to be at Peace.

And if God has brought me to this place, to find that my heart is the only thing I can control.

 Than I am thankful.

 He is mending me, bringing me to a place of realization that my only hope, is in Him.

Then, as only He does. He led me to this....



This Hour, can be the Magic Hour. I can be present in this storm, basking in all that God is.

Into the peace of these wild things,
Into the wild of this grace,
Into the grace of this blessing,
Speak in the peace of this place

If I fall into the Sea, He promises to rescue me.

So when these waves of emotion fall over me, he is teaching me to call out to Him.

He can walk on water, reach down, and lift me up.

But, the Key, is to Call out to Him.

He will rescue his Child that has fallen over board.

Thankful His boat, is the boat Of Life.

And Of Mending.

Really?!? Thank you God!

So. Yesterday was just one of those days. The kind you have to search and look for God's hand, because it's not so easy to see. After the dreaded phone call, the day before, and the endless waiting for calls to schedule appointments for Elliott. I decided to keep busy. I have to say, for anyone who has ever been facing health struggles for your child. It's a very surreal place to be in. Everyone else is living their daily lives, and you just seem to be frozen. Strange. Perhaps. But that is how I felt yesterday. And when your in that frozen moment, you do strange things to try to "feel normal". When in reality, your anything but.

For example. I went around the house fixing things. Random things. Maybe it's because I can't fix this situation. Glue gun in hand, every darn trinket that needed repaired. Has been.
Then I cleaned. And when I say cleaned...I went OCD freak. Took magic erasers to every door frame in the house. Maybe it's because I'd really like all of this to magically erase as if to say "Be gone sickness!". I scrubbed my kitchen floor so hard, you could now eat off of it. I washed every rug in the house,every bed linen,every dirty piece of clothing. At one point Jackson said, wow mom, who's coming over? We had Liam, our 2 year old cousin over, just so I could say we were "having company". Because, you know, 2year olds can totally tell if your house is a mess. And so my kids would know, "Oh, this is Mom just doing her usual, "Ack,someone is coming over, clean like crazy" routine. Not the "Ack, Mom is loosing her mind, and going OCD psychotic on us!"

The plus side to all of this?!? I woke up to a beautiful clean home...down side? Every freaking bone in my body hurts.

So, as I'm cleaning, Liam is over playing with cousins, Elliott is chilling in our bed. Thank the Lord for PBS Kids.(he doesn't understand the concept of commercials, and gets SO TICKED over them, and we are thankful for a TV,after a few years of not owning one, Daddy surprised us and got one before the Olympics! Considering the only thing he feels up to doing is watching tv or sleeping, I'm so thankful we have something to occupy him.)

I'm cleaning like a psycho.

Two precious friends called. Not just one. But two. They know me well. They knew I was probably loosing my mind. These are the two friends who have repeatedly dropped everything to run to my side. Since they live like 800 miles away, they can't do that. But they can call. Man, I'm so thankful they did. Those were the only two times I sat down yesterday. I'm a bad friend. I don't call people like I should. Thankfully I have friends who know that, and choose to still love me. I am so blessed. It was great to hear their voices. Besides the whole "How is Elliott, are you okay conversations" Every thing was normal. I could hear their precious babies in the background, made me miss not being able to hold them and love on them. I love those babies like my own. We laughed, and one had to go to change an exploded diaper. And in that moment, everything was normal. After I hung up with them, I felt so blessed. God is good to give me these glimpses of goodness through the friends He has given me.

I got on face book. To find THE  MOST encouraging note, from a friend and Mamma who's walked a simular road. God knew I needed that. Desperately. I seriously stood in my kitchen making a gourmet lunch for my kids (Watermelon and smoothies!) with the computer propped up on the counter, sobbing.

 I could only read portions at a time because I was SO overwhelmed how God spoke through a woman I have ALWAYS greatly admired and looked up to. The fact that she took time out of her busy schedule,and own health struggles to offer me encouragement. WOW! I was blown away!

After Liam left, it was still daylight outside, the kids had been coming in and out from the back yard. But I told the kids it was time to stay inside, I walked to the front door, locked it and turned the alarm on. Why, I don't know.

Actually, I do. It was God prompting me!

 I made the kids dinner early,(never happens),bathed them and put them in our bed to watch a little PBS before bed. I went to put the rest of the clean laundry away in our hall closet. When I heard the front door knob rattle. Brandon had just texted to say he was on his way home. So I thought for a split second it might be him.

We had just replaced the dead bolt because on Wednesday (upon arriving home from the doctors office), my key would not even go into the lock. It was like someone had tried to pick it. I thought it was strange. But our landlady was really nice, and brought a lock (and we talked for over an hour,she's a sweet Christian lady!) and Brandon replaced it on his day off Thursday.

 Oh! And one more tidbit. Last week, Jackson left his bike on the front porch, someone stole it. A sweet neighbor saw it in the middle of the street at the front of our subdivision and we recovered it. But still. Not cool.

All the lights in the house were off. So I switched the front porch light on when I heard what sounded like someone tripping. I said "Brandon?". No response. I ran to Clara's bedroom window, nothing. I called my sister in law next door, she told my brother, he ran outside, and saw the perp in the neighbors yard across the street running away. I called the police. They think they know who it was. I honestly had to laugh. I had no tears. I'm thankful for the alarm. And for my brother being right next door.

Brandon came home, and the police were getting a statement from me and combing the area with mag lights and dogs. I got the mail, and came inside. What can I say, when things like this keep happening, you just carry on, and getting the mail seemed logical and a normal thing to do.

 Brandon ate his dinner, just another normal night at our house. You know, with the sweet sounds of police and dogs combing your yard, zipping up and down the road. Brandon was opening the mail, when there in front of us was an envelope from the power company in Indiana. My first thought was "Is that a check?". Now that would be the icing on the cake of this wonderfully bizarre blessed day.

It was a Check. And we just sat there staring at each other. God knew we needed gas money this week. And he sent it via American Electric, because apparently, we over paid our bill. Two months ago.

And that's the end of our crazy day....where I could not stop saying..."Really?!?".

"THANK-YOU GOD!"