Tear-Stained Cheeks

Some of you know, we took Ezekiel to University of Michigan on Thursday due to increased seizure activity. His demeanor changed so drastically since we had started the NG tube and was declining and quickly.

I still blame it on the formula but then there's this other thing. The prayer for Mercy. Ya see, this disease, Batten's form NLC2 that Zeke owns is a form that allows a child to live anywhere from 8-12 years old. A sad, sad diagnosis for any parent or loved one to hear.

But, how would a life slowly or I guess quickly being taken away be a good thing if they could make it to 8 years, 12 years?! From what we had seen in Zeke, the suffering prolonged sounded like a curse, not a blessing.

For Andy and I, through prayer and wisdom sought out to our Heavenly Father, we realized that comfort was our highest priority. Quality, not quantity in the time we have with Zekey. Why prolong suffering? Why let him breathe through a ventilator while he is brain dead? It seemed selfish.

With this new peace we had, we started praying differently.

"Yes, Lord, please heal him. We know you can. May Your will in heaven come down to earth in Ezekiel's body. But, have mercy. Please don't let this disease drag out. Please make our boy comforted. Heal him + have mercy."

Do you see? When we do not fear death, we have freedom to pray in a way that gives in to trusting more to One who can and should be trusted. God himself.

We will pray like David, asking for his precious boy to be healed until his dieing days.  For our sweet boy, Ezekiel to be healed because we are called to and God can.

But we want God's mercy poured out. We cannot tell the future but we can be obedient and give God space in our hearts and our words to do BIG things.

Asking for mercy has brought a quick decline. As in, the latest picture you have seen of Zekey in Cincinnati, smiling in a wheelchair is no longer the boy you would see in a picture of Zekey now.  He can barely smile, cry out and he is dead weight. No longer able to hold himself up in anyway. No longer able to jump on his knees sloppily to show you his joy. He chokes on his flem and hospice is coming soon. Very soon.

Now, we are thankful for a smile.

His body is literally overcome by involuntary movements causing his arms to be thrown up in the air and then his feet follow. It's as if you are watching a moving where someone is being controlled by one who holds their voodoo and their body responds in ridiculous ways. True story.

He is exhausted. He knows that his body moves this way because when given a split second to be free to think, he thinks it's annoying and cries out.

He's suffering. He's exhausted. He needs healed. He needs mercy.

I don't know what his healing will look like. I do not know how mercy will continue to unfold but I do know these will come to pass one way or another. What Jesus did at the cross was so big that this disease will be wiped away completely either here or there. God is merciful and may show it through taking Zekey home sooner than later...

I just do not know. But details matter less and less. I feel as though I am snuggling deeper into my Heavenly Father's arms as I hold my sweet boy. I have peace where there is chaos all around. I rest in His goodness and the truths of who He is. And I am still + know He is God.

And I cry and I hold and cuddle. I look as deep into Zeke's lost eyes as I can to try and get that split second to be able to steal a smile.

University of Michigan's Children's Hospital (Motts) kinda blew everyone else out of the water.

Columbus neurology was a terrible experience for us. I cringe at the thought of that season even though Zeke was much healthier than he is now.

Cincinnati was our saving grace and I honestly believe God intervened and brought us to Dr. Franz who came along side us, took Zeke's "case" and did some really great things for him and our family.

After moving from 1.5 hours from Cinci to 3.5 hours (our moving close to family), we mentioned we'd like to try and work with a neuro closer, suggesting UofM. His eyes lit up as said he knew 2 really good neuros there and would be happy to work with them. It was perfect!

But when Zekey started this downward decline, we knew we had to get him in somewhere. Toledo hospital just doesn't have the professionalism (to be nice) or the resources to take care of Zeke's case. So, we took him up to Ann Arbor...."That place up north!" say the buckeyes.

I didn't expect it to be better than Cinci. Once we were actually admitted, I couldn't believe the beauty and space in the room. The view was breathtaking and our care was top notch. The bedside manor was better than anything we have experienced. And again, I have only good things to say about Cinci so to be even better says something.

The same Dr. that Dr. Franz had mentioned he knew and really liked for us was the same Dr. on that night in Ann Arbor. Dr. Robertson. Interesting....

She was lovely and was so excited to know we came from good hands, Dr. Franz. She took her time talking with me, loved on Zekey, cried with me, hugged me and did everything she could to make him comfortable. She also let me make the decisions that didn't need to come from a dr. because she believed in me. She believed my goal was to make Zekey safe and comfortable.

One of the residents in Ann Arbor (Michigan for you people not familiar with that team up North) asked for me to go into more detail as to why it was such a difficult stay in Columbus (every wolverine wants to hear why a buckeye sucks...ha!) and I basically summed it up saying, "At least in neurology, because I have seen friends get fantastic care in other specialties, they were extremely egotistical and wouldn't hear me out. My opinions or concerns for my son were often shrugged off. They didn't speak to me as a human but as one who doesn't have a doctorate. It was terrible. If I had any wisdom to give to you, I would just remind you that you have worked hard to earn your degree and that's something to be proud of, but the families you come in contact with are suffering and I can't speak for everyone, but a lot of us are here because we deeply love our child and want what is best for them."

She smiled and was also one who told me she was praying for Zekey and some other really nice things.

It's clear God's doing big things in the hospitals he takes us to as we use every opportunity to share the peace and hope we have because of Jesus. We cry, yes. The peace and hope is still something we have in a world not yet made right. So there are tears, there is brokenness, there is death.

But Jesus already won and so we cling to that more than anything else we see going on here. We share this beautiful hope with others and we ask for God's kingdom to be ushered in.

And there is beauty in so many of you who are begging to help in some way. Today, a surprise blessing from Kristin, over @ LilyandLight,  who was supposed to be my roomie at the Influence Conference I missed due to Zekey's sickness. She came and visited me (and little Bexley) at the hospital!! Just her presence and willingness to come into my chaos blessed my heart so very much.

Kristin, thank you for my Influence Necklace and journal! I felt like I got a small piece of the weekend so many woman were blessed by through these little gifts. You're as lovely as they come!

To my readers: Your words of encouragement and prayers are so appreciated and felt. I cannot respond to all the love you share but I see it and I'm so, so thankful. Our family will forever remember the love of Jesus poured out through so many of you.

Thank you. From the bottom of my heart...thank you.

A Cry For Mercy.

I sit here on a Sunday morning and I just want to share my heart and update you all on the latest. It will not be smooth or creative, just my heart which is broken and hurting, hopeful and ready for Jesus to make things right. So, bear with me.

My heart is heavy and I feel very burdened.

Ya see, I know it's coming, all of this regression in Zeke because we've seen it and it's a part of the disease. I can still remember when he was running around getting into everything and making us laugh whenever he could. He was so rotten yet so sweet and the boys' intelligence was way beyond his years. He was a walking genius + goofball.

Now, he does all of this to the best of his ability. He bounces on his knees while on my lap and laughing the best he can, in between seizures because he sees it makes me laugh. And that's what he does- he makes people happy. He brings joy that only the strongest can bring while going through the most terrible of diseases.

Ezekiel means "God will strengthen". Amen

But then there are times when he's crying and no one can pretend for even a moment that he isn't suffering. It's the kind of suffering a momma can't even relieve with a firm and loving hug or the sound of a lullaby that once brought comfort. No, it's the kind of suffering that makes you want to scream and beg for God to take him. To take Zeke into the one place where all his suffering will be wiped away.

I catch myself asking for healing thinking of either here or there (heaven). The details matter less and less to me. I just want relief for him. Right now? He's suffering and it's numbing and I can't even mourn 90% of the time because I just want to bring the most comfort to him, that I can muster up which is usually just holding him. A lot.

Oh, and my other three?  Well, we are doing our best. Aren't we all?  Thankfully they have three other family members loving on them while we tend to Zeke almost constantly. I try to focus on that positive side and not the fact that we don't get to just be with them as I wish. I'm usually wound so tightly from lacking so much sleep, energy and whatever else is left that's needed to love well, that they don't get the best of me. I hate that, but working on it.

I know God's changing me for the better but all I see is how far I have left to go. I have a hard time with the beautiful gift of grace freely given to us. I just have to believe God's brought me to new places and will continue to mold me more into who He really wants me to be. Resting in the Holy Spirit inside of me to give me the power to love when I want to hate. To silence when I want to scream. To trust God when I want to question.

Having my eyes opened to a fraction more of the sufferings of this world, to see the enemy hard at work in the lives of so many makes me desire Jesus' return more and more. Right now, He isn't here so I take it day by day, living out my faith and enjoying the blessings I'm given which is easier to do when there isn't a massive burden of a child suffering or the thought of sex slavery, or all those aborted, or or or...

And I want Zeke healed. And the more I think of it, he's so much closer to heaven than we, why would I beg for him to be ushered back to us before Jesus comes? Why not 'let him go' to the best place there is!? Why not ask God for mercy in taking him sooner than later other than begging for him healed in this world when he'll suffer in other ways. The enemy would for SURE be out to steal kill and destroy a boy with such a story...but if Zeke is taken up to his loving Father's arms, the enemy cannot touch him. Trusting God...always learning to trust.

This broken world inst it, you guys! There's so much better coming for those who claim Jesus! Whatever your dreams are, your goals, your gifts, use them to bring others to Him and do not desire them more than you desire your King!

The enemy is hard at work, brothers and sisters. He wants to watch us break and crumble with the trials we are promised  (due to this very broken world). The enemy wants us to curse God and walk away from the one thing that has saved us, our faith in Jesus. He wants to make our passions and desires our gods. He wants to bring success to keep us from realizing our need for Him. Whatever it takes, he will stop at nothing...

We must stand firm. Not conforming to the ways of the world but more into our loving Savior, Jesus Christ. We must let our lives be a light to those who are searching and may not even know it's Jesus they are searching for. But we know. We know He is the ONLY one to bring a true rescue and hope to the everlasting life where there are no more tears or sadness. Don''t you want this for your friends and family? For your sons and daughters?

You can't make it happen for them, you can't give them salvation and even your prayers will not save them (but pray! Always pray for them!)...

We need to live out our faith in all areas so they can see the difference in us, that being Jesus. And when we fail, be willing to admit it and our need for Jesus just as much as they need Him.

S Timothy 4:1-8
"I charge you in the presence of God and of Christ Jesus, iwho is to judge the living and the dead, and by jhis appearing and his kingdom: 2 preach the word; be ready in season and out of season; kreprove, rebuke, and lexhort, with complete patience and teaching. 3 mFor the time is coming when people will not endure nsound1 teaching, but having itching ears they will accumulate for themselves teachers to suit their own passions, 4 and owill turn away from listening to the truth and pwander off into myths. 5 As for you, qalways be sober-minded, rendure suffering, do the work of san evangelist, tfulfill your ministry. 6 For uI am already being poured out as a drink offering, and the time of my vdeparture has come. 7 wI have fought the good fight, xI have finished the race, I have kept the faith. 8 Henceforth there is ylaid up for me zthe crown of righteousness, which the Lord, athe righteous judge, will award to me on bthat Day, and not only to me but also to all cwho have loved his appearing."

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When we took Zeke to receive his IVIG treatment, he had lost more weight. He's eating a lot but seizures take up calories so they wanted to get him plumped up. After doing a swallow study,  Zeke isn't swallowing as safely as he needs to be. When he seizes, it stops him from sallowing and that becomes a danger. So, he can have pureed foods but he gets all of the calories he needs from the formula they have us put in his feeding tube.

Yes, a feeding tube. Just another reminder my boy is slowly dieing. It's intense at first but we're getting used to it. It's obviously extremely inconvenient for him, for us, but he's got to eat! So, we do it. 

If you know me at all, you know that feeding my kids healthy is extremely important. This season has ripped out my ability to do that. Not just for Cy, Eisley and Bex because I do not have the time but Zeke now, too. 

Just because Zeke was diagnosed with Batten's, it never meant that I wouldn't care as much about what he ate. He's still my precious boy and so I wanted to love him just as I loved my others. By caring about the foods they eat, so to keep them as healthy as I could. But, this season doesn't allow for balance. Balance is a joke during this season and so, again, learning to trust. Trust God and do what I can.

The formula being pumped into Zeke all day and night is full of...crap. The first ingredient is corn syrup. It was like a knife to my heart when I found out. I feel guilty. I know formula isn't as healthy (or even close to) as the smoothies I fed him chalked full of organic fruits and veggies, staying away from gluten and all of his other allergies. Grass-fed beef, wild salmon, pastured chicken. Nope. I have to feed him this formula and it's making him worse. The food we eat matters and when one is so very sick, it shows up quickly.

This season, especially as of recently with the feeding tube, I'm trying to learn more about trusting God and I have many areas to keep giving over to Him. Areas I cannot control. I'm also learning that I can't lean on the saying, "God's in control" because although God is all powerful, we brought sin into this world and the enemy rules this world. I have to be responsible in how I feed my kids, how I raise my kids, how I teach my kids about life and Jesus and...just because God is God doesn't mean I do not play a part in this life. God's full reign isn't here yet, by His choosing. When Jesus comes back, all will be made right. For now, I have to constantly balance trusting in God but also doing my best in the callings I have on this earth. Make sense?

A random but encouraging read.

2 Corinthians 4
"

The Light of the Gospel

4 Therefore, having xthis ministry yby the mercy of God,1 we do not lose heart. 2 But we have renounced zdisgraceful, underhanded ways. We refuse to practice2 cunning or ato tamper with God's word, but bby the open statement of the truth cwe would commend ourselves to everyone's conscience in the sight of God. 3 And even dif our gospel is veiled, eit is veiled to fthose who are perishing. 4 In their case gthe god of this world dhas blinded the minds of the unbelievers, to keep them from seeing hthe light of ithe gospel of the glory of Christ, jwho is the image of God. 5 For what kwe proclaim is not ourselves, but Jesus Christ as Lord, with lourselves as your servants3 for Jesus' sake. 6 For God, who said, m“Let light shine out of darkness,” nhas shone in our hearts to give othe light of the knowledge of the glory of God in the face of Jesus Christ.

Treasure in Jars of Clay

7 But we have this treasure in pjars of clay, qto show that the surpassing power belongs to God and not to us. 8 We are rafflicted in every way, but not crushed; perplexed, but not driven to despair; 9 persecuted, but snot forsaken; tstruck down, but not destroyed; 10 ualways carrying in the body the death of Jesus, vso that the life of Jesus may also be manifested in our bodies. 11 For we who live are always being given over to death for Jesus' sake, so that the life of Jesus also may be manifested in our mortal flesh. 12 So wdeath is at work in us, but life in you.

13 Since we have xthe same spirit of faith according to what has been written, y“I believed, and so I spoke,” we also believe, and so we also speak, 14 knowing that zhe who raised the Lord Jesus awill raise us also with Jesus and bbring us with you into his presence. 15 For cit is all for your sake, so that as dgrace extends to more and more people it may increase thanksgiving, eto the glory of God.

16 So we do not lose heart. fThough our outer self4 is wasting away, gour inner self his being renewed day by day. 17 For ithis light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 jas we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."

Thank you for your prayers. We love them. We love you. 

A Spirit of Thankfulness

Lately, in the hustle and bustle of getting settled in our new, temporary home (that's spiritual talk right there, y'all-but real talk) I have found my time of getting alone or even in a regular communion with God is a challenge.

Being an extrovert, I LOVE that someone is always in the house, always. I LOVE IT! But, it seems to distract me from the communion I felt with my Heavenly Father when there was no one to talk to because, He was there to talk to...so I did. A lot. And although that has changed, thankfully, I still feel His nearness. Always, so close by.

About 2 weeks ago(ish) I found myself praying fervently for my son's healing, believing and just conversing with God about it but feeling like God was calling me to more-ushering to get closer to Him. So, I asked, "God, how do you want me to pray?"

This wasn't me asking Him what the magic words were or right order of prayer was, but asking Him to give me a specific way in which He was calling me to pray, during this season. I wanted to bless Him and as always, He wanted to bless me (no matter what that looks like, He is ALWAYS looking out for our good.)

I kept asking Him whenever I had a few moments of order and my brain could hold on to some sort of thought/prayer towards God. It took 5 days of asking and I was given a simple answer. "Pray with a spirit of Thankfulness"

Isn't it funny, how something you know is right to do, you've read a hundred times over, something your momma has reminded you over and over and yet it never sinks in quite like when the Holy Spirit brings it upon you? I mean, seriously. I know I should know better. I have listened to my momma, I have!

What I think happened when the Holy Spirit spoke to me, was that I had obeyed in understanding there was more I should be doing in my daily prayers and so I asked believing I would receive. And my obedience was blessed with a simple answer but one that would draw me ever nearer to The Father. 

So, I can read that I should have a thankful heart, and I feel I have. I can hear my momma tell me to praise God in all things, and often times, although it feels awkward while I hold my slowly, dieing son, I can do it.

But, I sought out The Father to bless and obey Him more through my prayers and His answer re-defined being thankful for me. He wanted me to LIVE in a spirit of thankfulness. Do you see the difference? God opened my eyes to bless Him by looking around, no matter what is going on and see the many blessings. To have a spirit of thankfulness is to live with a thankful heart, seeking God's hand in all things because when we see that, how can we not be completely in awe and...thankful!

Practicing this is good. So good. I enjoy things differently. It doesn't feel awkward thanking God for things during this season because He redefined my definition and I'm so, so...wait for it, THANKFUL!

Today, I'm overwhelmed by God's grace poured out in our transition to new schools and a new home. It's too much peace to be anything other than Him. Too many details have fallen together. Thank you, God. You are good. 

Blessings, friends!

Making Home Again

We recently made a big and extremely last-minute decision to move back to where our family lives in Ohio. We avoided this decision because of our love of our home in Central Ohio. Our very first house that brought so many good memories (admittedly bad as well), a great community of friends from all different walks of life, churches, etc. and our own sense of space.

We loved what the city of Westerville and surrounding cities offered us. The culture, the FARMER'S MARKETS!, the fresh and clean feeling you felt everywhere you looked. We.loved.Westerville. (Central Ohio). Nothing in Westerville was making us to want to run. But that didn't mean it wasn't what we were supposed to do.

Our Zekey is very ill and with his diagnosis, apart from meds to slow down the process or being healed, he will only get worse. There is no cure. While on vacation with my side of family, I realized that with all of their help, I still felt overwhelmed. I honestly thought, "How have I been doing this all alone?" 'Alone' as in 'mostly alone'. I have had so many people offer to help and come in to our lives and serve on some capacity. It's been a true blessing! We are so thankful!

In this season, though,I need to have family all up in my life. I need naps, sometimes (because Zeke doesn't sleep well) I need to have people around, just to be there for my sanity. I need to be able to pack up the kids and head to my parent's house on a whim. It's just getting too difficult.

With school starting up, we thought it was important to get them registered and make school as smooth sailing as possible. This meant moving VERY last minute and leaving my husband behind so he could finish up this month at work.  We packed up a week ago and drove to Toledo, not looking back.

When I pray for wisdom, the answer usually comes with peace in the right decision. Like an overwhelming, God can only give it, kind of peace. What it doesn't mean is that it will be easy or it's going to happen without a hitch. Not even close. This has been very consistent in how God speaks to me when I search for wisdom- my whole life. I realized this a little later in life than I'd like to admit. Could have avoided too many boys before my current Mr.;)

We trust God is going to provide a job for Andy. We trust our house will sell quickly. We trust our children will find new friends and we'll find a new church home. We trust because we have seen God take care of us many times in the midst of chaos. Zeke's illness is definitely the worst we have ever dealt with but the rest of our life hasn't exactly been easy. And that's okay. God's brought blessing throughout it all.

I wanted to finish with one of the most prominent blessings we currently posses. Our new 'home'. I have the most hospitable in-laws you could ever ask for. They have, for a long time, felt like family as my own do. They have embraced me and of course, our children as they so quickly came. And coming here whenever we visited, there was always a place to stay.

With Zeke's health depleting, the option has always been open- to stay with them. Giving up what's theirs and offering it to others. And they do this with everyone. Not just family. Giving is in their blood. In who God made them and I get to be on the other side of that during a time we need it most.

Bonus! What makes this all work, is that they have the space for us. A big, beautiful home that makes it not just work for us, but cozy and it feels like home.I get to hop, skip and jump right over that 'waiting to make a new place feel like home' season. We are home and it's in a different city and house than what was home just 7 days ago. What a blessing! We are all happy to be here.

So, what makes a place home?
"Home is where the heart is"
"Home is where family is"
"Home is where my kids are"

How about, "This home is temporary, be thankful and just keep following Me."

We will not be here forever, this season, this house, but we're here now. So, I'll look around at all the blessings, feel thankful and when it's time to move, I'll look up and ask, "Where next, God?", ready to follow His lead. 

P.S., Anyone looking for an adorable, 3 bedroom cape cod in an amazing neighborhood and Westerville schools? It'll be for sale soon!!

To, Breena. Love, Bree.

I just read a letter I wrote to Andy, my husband over at TheSometimesPreacher.com (ha!) written while we were dating. I read it with a smile but I thought about that young girl and I just wanted to take her to coffee. To a shop that stayed open late and wasn't too popular because I would know, of course, there would be tears, there would be laughter, there would be joy and there would be hope.

As I asked her for coffee she would oblige happily, with a giggle because she was like that with people. And she would, of course, be thrilled to add another friend into her life. She loved people. And she loved when they loved her back, for her inward beauty that she didn't know much about back then.

As I sit her down, she's happy to talk of her young love, the church she would plant with her future husband and friends that would reach many broken people. She would mention the 4 kids she would have and how she was always going to be a stay-at-home momma. She would say that she would always have the same friends and maybe add a few more. Toledo was her forever home and that she was blessed.

After she was done sharing her future, I'd look at her and my eyes would get filled with tears, but I wouldn't blink. It wasn't quite time to let her in on the sorrow to come. She would get a little uncomfortable and wonder why I wasn't agreeing with her clearly written future. How it was all going to be so smooth sailing. How it was all going to be so good. How, planting a church was difficult, but is was definitely not the hardest thing she'd face.  My silence would unsettle her.

I would then take her hand and look her square in the eyes and ask if she believed God was good all the time. And she would quickly reply, "Of course!"

I would ask her that if her plans were not the same God had for her, would she be okay with that? She would start to get a little anxious wondering how life would be that much different than what she had planned. She would then very naively say, "Whatever God gives me, it's what I can handle with HIM!"

I would then say, "Sweet Breena. You are so loved. God is for you. Always know this. Always hold on to truth no matter what comes. When life doesn't look as you thought it would, know God's doing big things and wants to use you to share more of Him. Ya see, He knows what is best for all of us. He isn't out to get glory. No. He is concerned for our hearts, our souls. He knows He is best for us and He will want to use you to show that to others.

And the younger Breena would say, "Oh yes! I want God to use me! I want others to know Him more!"

And I would reply, "Good. He knows that, too. But it's not always easy to share the most powerful story in time. It's messy and challenging. It's brutal and unfair. You'll get hurt and so will those whom you love and will learn to love. People you do not even know now. They will suffer, too but God is so good at taking the brokenness of the world and using it to get the attention of those who aren't listening for Him. Those who have walked their own path, not the path of the righteous. He wants to bring others to Him and He wants to use you. Will you stand firm in your faith? Will you let God use your hardships to bring others to Him? Will you love Him through it all? Will you believe in the unbelievable?

At this point, Breena is crying. She's scared and confused. Through her sobs she says, "What do you mean?! What's going to happen?! Who is going to die?!"

That was her biggest fear in life. Losing a loved one. She's sure that is what is in her future.

I say, "Oh dear, Breena. You'll learn to find the joy in the trials. You'll learn to love more like Jesus. You'll learn what it means to be a sister in The Body of Christ more than your blood relatives. You'll learn that this world isn't your home and you'll want to share all of these things with everyone you come in contact with, because, you'll learn the importance of following Jesus through it all."

And she'll say, "Who is it?! Who is going to die?! Please tell me so I can prepare myself! So I can tell them I love them!"

And I will hug her and say, "Everything will be okay. God is with you always. He is stronger than your fears and stronger than sickness and death. Your tears will be used to clear the dust off the eyes of many, so they may see the truth. The only truth that matters in this lifetime. You just have to say yes, through your tears. Over and over again. Keep saying yes to Him. He'll do the rest."

And she'll look down at her very wet tissue, through her tears and say, "Okay. I will. I'm so scared."

And I'll say, "I know. You'll learn to overcome fears by the power of the Holy Spirit that lives inside you. And you will learn many other things. You'll learn to do things you didn't think you could do. You'll see God has gifted you in ways you would have never uncovered without going through some stuff. You see, God is making you new. You can either let Him and through the pain hold on to that truth, or you can continue to get consumed with the world and recover what God's trying to uncover. We all have this choice. Stand firm not in your own strength that is bound to fail you, but in the strength of your Heavenly Father who loves you with an unshakable love."

And she'll look up and I'll be gone, and she'll find herself in her bedroom not really remembering what it was that she dreamt but she'll have a sense of peace.

The same things God says to Breena, He wants to say to you. Are you listening? Will you follow Him?

The Girl Behind The Blog- Encouragement. (And a thank you!!)

How funny is it to vlog? Very. But kinda cool as you get to 'see' or shall I say, 'hear' a new side of me. Enjoy!

Bree

Zeke's diagnosis and hope

When I said that in order for God to get full credit in Zeke's healing by making every other option on this earth to be possible fail, He heard me.

I took Zekey to his second IVIG treatment at Cincinnati Children's (LOVE IT THERE, P.S.) on Tuesday on my own as Andy had to work. I knew that if this treatment was going to work, we would have to start going alone. It's once a month and a 20+ hour treatment and the other three need to go to Toledo. While in the hospital, no one, including Zeke, gets much sleep and that makes everything worse. So, it's all just a lot but of course worth it if it was going to work for our sweet Zekey boy.

Before we set up, I was smiling as the nurses were coming in, talking to Zeke and I, getting all prepped for our soon to be miracle, right?


In comes Zeke's amazing neurologist, Dr. Franz. I was so glad to see him! I knew he wanted to meet with us since Zeke's case is quite severe, many treatments have failed so he watches closely with these patients until something works.

Well, he was a little gloomy-forcing a smile. I can sense these kinds of things. We had small talk and he did his usual high five to Zekey. He was very concerened how I was doing. Then the small talk ended and he paused. I realized, he had something very important to say and it wasn't going to be good.

"Well, I'm very sorry to say... Well, I was really hoping your husband was going to be here, too. Your son has a very rare genetic disorder and it's not good. He has a form of Batten's disease..."

I was holding onto every word he said although I was numb. I wasn't surprised, not at all. Something, was clearly wrong-we knew this.

He went on to tell me that it is unfortunately the worse of the two options that could be causing his seizures. The fact that all of my and his efforts were failing time and time again made him wonder if one of the tests he sent out for, being a genetic disorder, were going to come back positive. And they did.

"The reason why his seizures are not able to be controlled is because his brain is letting off a toxic chemical and it's causing malformation in his brain which is causing the seizures. He will eventually loose his eye sight, his ability to eat, control his saliva, breath. I'm afraid he is only going to get worse. His seizures will eventually get so bad, they'll stop. He will become brain dead and that's when I let the families decide on what to do from there. I don't judge their decisions."

I replied dumb-founded (because this was the worst of the worst...he admitted to that) "Okay...so, um, how long does this progression take?"

Dr. Franz, "Well, you know, only The Lord knows that."

BINGO! I am talking with a brother in Christ, thank you JESUS for bringing me to a place where not only are they taking such good care of us, you sent me to a Dr. who puts his faith in You, so he knows the hope we have!!! I was so thankful for this. I needed that so, so much!

He continued, "It takes approximately 3-5 years before he gets to the final stage. I'm sorry to say it's extremely progressive. There isn't a cure."

At this point, I start to cry because, how do you not?! Then I start to sob, because how do you not?! Dr. Franz takes Zeke from me so I can just get.it.out.I then say, "This is the kind of thing that makes heaven so beautiful. Zeke will not be this way in heaven. We are strong beleviers and we will be praying for healing, here on earth, though."

He replied, "Well yes! Don't stop praying for that!"

He was kind, and compassionate. Before he left, he took my hand and looked deep in my eyes and told me he was so very sorry. I was looking at, not a stranger, but a brother and that was such a blessing in the midst of devastating news.

The nurses were all notified and checked on me often, like a friend would.  They would give me hugs and say, "God bless you " when their shift was over.

I then had to call Andy. And that was so difficult. I wanted to tell him good news but there wasn't anything other than the blessing of Dr. Franz and I talking of heaven and of God. And that's good news, right?! I mean, that's straight up 'THE GOOD NEWS'!

I had a little time to process it all but honestly, every time I began to sob, Zeke needed me or a nurse walked in.  Andy had to work late at night but then I came to a place where I needed him. Not just emotionally, but physically. Being at the hospital is not easy, especially with Zeke. I can't even begin to describe the difficulty. God love him! ;)

So, we left. Andy headed into work and I went straight to Toledo. I had already called my parents. My siblings. I didn't have any time to really grieve, yet. I am literally 110% needed by Zeke and have 3 other sweeties on top of that. To get a second to breathe and take it all in, even talk to God was difficult.

I go Crazy at hour 15, people. 'Why even put on make-up?', I ask myself.

The ride to Toledo was full of worship music because Zeke does best with music on. But I can't help but sing to it which means I was only able to pray what I was singing. I knew God was with me.

In my doubt, I asked Andy, "What do we pray for? This diagnosis is huge."

Andy replied, "We pray for God to heal him. That doesn't change. It never will. The diagnosis doesn't change anything."

That blessed me so much. I needed reminded of that. This diagnosis is minute compared to our God. He is fully capable of healing our sweet boy. His sweet boy.

So, we continue to pray for God's healing. To be the persistent widow. To pray The Lord's Prayer over him. Why on earth (ha!) would we stop praying that?!

We also thank God for what He's doing because 'doing' is definitely going on. I mean, is your heart being stirred in a way it hasn't before? Do you feel the Holy Spirit bringing you to a new place in your relationship with God? He's doing things in the hearts of so many through Zeke's illness. And believe it or not, that blesses us. It keeps us going! Why go through this for nothing?! This isn't just about Zeke. It's about through his story, God is being revealed. He is living up to his name.

So, until Zeke is fully restored, as we ask you pray with us, we will pray for strength and mercy and wisdom for those who are working hard on finding a cure. Pray with us?!  THANK YOU!

*What is Batten's Disease?!*

Basically, it's rare. Two people have to be carriers in order to have a 25% chance of passing on both recessive genes (Andy and mine) on to one child. All of my children had the same chance of getting this disease. They all have a 50% chance of becoming carriers and a 25% chance of not carrying it at all.

Batten Disease has 4 different "time zones", if you will.
1. They can be diagnosed from conception and never really develop well, right from the start.
2. They can develop it at age 2 and up until then, develop fine, as Zeke did.  It starts with seizures, then they loose their eye-sight as that chemical gets into the nerves of the eyes. Next, they slowly loose all of their functionality. Usually, after about 3-5 years after diagnosis, they become brain-dead and are unaware of life itself. Rarely do they make it to early teens. This is when he gives the family the choice on how long before letting go of what is now only a body. *Choking down sobs* what a horrific disease that one too many have dealt with! 'May Your kingdom come, Lord Jesus!'
3. They develop in later adolescents (age 7-10)
4. They develop the disease after age 30.

The refreshing thing is, when you carry the gene, as Andy and I both do, we are not effected and you only carry ONE of the 4 option. Andy and I carry the Later Infantile gene (#2), which means our other children are okay. Bexley isn't showing signs as Zeke was at her age, so he says there is no concern there.

So, what do we do with our other kids? Well, since we know the exact gene mutation (that many Ohioans have as whoever came to settle here, brought this gene and it takes two to have the possibility of the disease and even then, it's a 25% chance.CRAZY!) they know where to test the other kids. They will see if they are carriers. If they are, they just need to be sure their future spouce isn't a carrier, then the children will not ever get the disease. And if they want to be 100% sure, they can get a non-carrying egg or sperm and do invetro. Wipe out this darn disease for good!

Clear as mud?!  It's fascinating, to me. Obviously terrible and so a part of The Fall.

As always, thankful for the power of The Cross and what that means for those who walk with Jesus.