The Forever Mourning...

My heart, it aches. My tears, they fall closer together. It's like my whole being is starting to understand. It's coming.

The Spirit, it groans within me. Not uttering a human word but only those to The Heavenly Father that bring a peace in the midst of such sadness. Words that bring me strength where I only possess weakness.

And I'm left here with what feels like a forever mourning. Mourning this slow death of my third born child. A boy whose being is so bright, it cannot be snuffed out- not with a million seizures, not with another dose of meds, not even with his final breath. His light comes from something deeper and truer than even the light of the sun.

The enemy. He will not be satisfied. He will and is rejoicing, if he can even do such a thing, with every healthy section of Zeke's brain that is burned by the acid leaking in. The enemy, he thinks he's winning. He is so engulfed in lies, he cannot see the truth. He has been cackling that evil cackle for far too long, believing the lies that come from himself and those that work for him.  But even he must sense it's coming. The suffering is coming to an end.

The heavenly angels voices must be getting louder and I see the enemy becoming afraid. The light is shining brighter and he's becoming confused.

"NO! NO! He's DIEING! Don't you SEE?! YOU'RE LOSING!", he says as he frantically looks around for a place to hide.

But again, he's convinced he's going to win so the enemy presses on, trying to drown out the beautiful, heavenly voices. The glory of the Lord shining ever so brightly as Zeke gets closer to His heavenly Father.

The enemy will not be satisfied for what he sees as death is what we know as an end to suffering and Zeke's entering into a beautiful eternity.

Zeke's fading and yet he's only getting closer to becoming whole and complete.

This truth is bizarre and hopeful. This suffering and eventual death, what we see and mourn here on earth are exactly what is getting him closer to his eternal home. A place where it will not even be a distant memory.

When tears replace song I remember, Jesus is making all things new. #prayforZekey 

Photo Credit: Me (BreeLoverly via Instagram)

Today at church, Andy preached from Ezekiel 9,10,11.  You can listen to it here.

Zeke was so tired but couldn't fall asleep as the familiar sound of his daddy kept him alert and not wanting to miss a moment of comfort that Andy brings him. And when the music is played and our voices sing out, I held his hand while my other in the air, taking the opportunity here on earth, to join with my boy, who is closer to the Saints who have gone before us in worshipping our God, our King, together as The Body of Christ. What an honor.

After the message, I felt an urge to give my now sleeping Zekey over to "Grandpa Nate" (my father-in-law) so I could stand next to my husband in more worship through music. Little did I know, it was just the nudge he needed in order to share what was put on his heart to share with the congregation.

"Unless God intervenes, this could be Zeke’s last chance to offer Grace Church a Christmas greeting. Unfortunately, Zeke is a young man of few words. So Grandpa Nate is going to take a shot at filling in the gap.

God can take a small life lived on earth and “map” it to huge, wonderful, and totally unexpected things in eternity. Here on earth, while we grown-up mortals try to make sense of what has happened to Zeke… under the radar… lives are being touched, hearts are being softened, and plans re-ordered. What looks like a small, insignificant life is one that is going to have eternal significance.

Grandpa Nate’s hope is that, in heaven, a tall young man will walk up, perhaps with a bunch of other people in tow, reach out a strong steady hand, look me in the eye, and in a strong clear voice say “I thank God for the small life he laid out for me to live on earth. It was an honor. It was a privilege.”

-Grandpa Nate Holt

As you can imagine, there was not a dry eye in the room. Andy's message, Nate's heart and Zekey's story were all used by God in big ways today. 

A lot of us have lives less than perfect. There is something or someone missing or something we long for. This is where we can take the story of Christmas and apply it into the deepest wounds, the loudest sobs, the biggest fears, the forever mournings and see it as a way to connect our lives here on earth, to an eternal life where we will long no more. 

"Christ has come. Your long exile is over. Lift up your eyes and, by faith, find your way home in him." - Andy Holt

Ya see, Christmas isn't about family and friends, gatherings and traditions. Heck, it's not even about learning to give over receiving- Christmas is about a God whose love was so good and true and pure, that He came down to a corrupted place as earth, in the form of a baby, to give us a hope that we had our King and we'd been rescued and forgiven. 

Today, we wait for his second return. He died the perfect death so we could live. Will you grab ahold of this story and start weaving yours into it? And if you already walk this life with the hope of Jesus, won't you declare it a little louder, share it a little more? "Go tell it on a mountain!" if you will? It's a story worth telling. It's a story that will end the forever mourning.

Ezekiel Todd Turns 4

Ezekiel was my child that stuck out like a sore thumb ever since the day he was born. We had just purchased our first house, preparing for his arrival. Women were praying through my house at the time my water broke on November 19th, 2009, 10 days before my due date. This is the same house we just sold to move to Toledo to be near family as Zeke's disease was taking over, is now officially, "The Zekey House."

Ezekiel learned everything at the appropriate time. He was actually my earliest crawler and walker and printer of random papers off of the computer. He was highly intelligent and always thinking. He was always making people wonder what exactly was going on through his head.

He learned to talk and then lost his speech. He learned to eat on his own and lost that, too. He lost his ability to kick a ball, to jump on the trampoline- something that brought him so much joy. He lost everything. He is now very much like a young infant. Unable to control his body movements or hold himself up. He cannot hold eye contact and is loosing his ability to see.

But there are random things he can still do. He laughs. A trumpet makes him giggle. Daniel Tiger's Neighborhood and CARS soothes him when nothing else, not even me, can. Everything is right in his world when someone is playing an instrument.

This birthday of his was by far the hardest holiday for me. I didn't want to have the party because I was an emotional wreck. I didn't want to start a year of celebrating 'survival' or 'lasts'. I didn't want to pretend we were all happy when we're all torn from the inside out with sadness.

But, just as we live out each day, being thankful for it, we were able to pull off a pretty amazing birthday for Zeke. All of my siblings and sister-in-law were able to make it as well as my parents and Andys'. Zeke had the best day. He was so happy and peaceful and just full of Jesus' light. I could not have asked for a better birthday for this season we are in.

We prayed to God, asking for Zeke's healing but thanking Him for never changing. More than anything right now, I'm so thankful for His constant and unwavering. It was a simple truth I knew and heard of my whole life but I can apply it so strongly and confidently now.

I can feel near to God and He is there. I can feel God's silence but know He's still there and even working in ways I do not know. I can be angry and He is still faithful. I can be praising Him and is worthy of all my praise and I can be too tired and distracted and He is still worthy.

Ya see, I am up and I am down. I am in a state of believing in the unbelievable and then I'm not. But it doesn't matter as long as I am still following Him.

God doesn't need me to believe Zeke will be healed in order for it to happen and that's a huge burden lifted for me. I believe God CAN heal Zeke, but honestly, I don't think He will. And :GASP: my saying that ALSO DOESN'T CHANGE GOD! I still ask but sometimes, through my tears, I tell God I don't believe He will. I them tell Him how I don't want to live life without Zeke. I don't want to say goodbye. I don't want the burden to have to believe God will heal Zeke in order for it to actually happen.

I want to have my head bowed, tears falling and my hands open ready to receive what God has for me. For Zeke.

I'm done having my hands clenched trying to hold onto a thought (believing Zeke WILL be healed on earth) in order for Zeke's healing to come to pass. I'm done with the pressure to believe a lie, that "Zeke is healed" when he is CLEARLY NOT HEALED. I'm done putting pressures on myself that are NOT FROM GOD HIMSELF.

God is capable and able. I am NOT. I believe God. I trust Him and I tell Him what I want but I let it go there.

Jesus won- past tense. Death and disease, for those who follow Jesus, have been conquered. So healing, here or there (heaven) isn't on me. I'm letting that pressure fall behind me as I keep walking this life, holding my boy and looking into the Light. No dark cloud or storm can cover what God's doing through Zeke's disease. I will not fear.

Please, don't stop believing in God and what He is able to do. Please ask for His healing hand on Zeke. We are called to it, we must not stop asking.

Enjoy these pics from the party....

It wasn't meant to be this way...

When my heart is given just a moment to grasp not the reality of the situation so much- Oh, no. I'm completely engulfed in reality every minute of every day (and night!), but the feelings that are real and true but oftentimes get put on the back burner, I feel that is when I can actually blog.

That and mingling up a few moments of energy. Is mingling up the correct phrase? Because in this tired momma's brain, that's all I can think of.

I'm tired, you guys. We sleep as if we have a new born and on a good night, it's as if Zeke is 3 months old and not waking us up every hour but every 3. This isn't recently, this is 2 years and counting.

Meds at 5 am but never to forget because Zeke is up at 4am that being the 3rd time that night.

Feedings and opps! There goes the connection....again! Let's clean his bed up for the 2nd time today. The whole.thing.

Diaper changes for 2, please! If only I had the time to potty train Bexley...she's ready.

Loving on Zeke because now that he isn't able to let you know as much when he's sad and misses you, you can just let him lay in his bed downstairs near the beautiful window and watch something that will bring him peace. You can add guilt in there, too.

Loving and quality time with the other three and wondering where my energy is even coming from. Always fighting to not give a really good excuse to wait until tomorrow to hang out with them.

Getting the kids to take a few moments and acknowledge Zeke. Dear God, you guys! Can't you see he's DYING?! TALK TO HIM!!! MAKE HIM LAUGH! DON'T YOU SEE HOW GOOD YOU HAVE IT?! The things I say when I forget my kids are...kids. but, still. Damn.

Andy works 2 jobs which is a blessing but hard on the kids because his time off is mostly while the older two are at school. Lovely. They miss daddy.

Thursday, when Andy is gone the whole day and then the nurse leaves (we have a nurse now, 2 weeks and I do get a break...and I feel guilty), I start to really loose it. I can't explain it, I just get stressed over everything and everyone. Oh, then on Fridays, too. ha.

Andy and I? Well, we totally understand why divorce rates are 30% higher with a child who is sickly making that an 80% divorce rate. Try and fight me on that telling me I'm wrong, I dare you...dare.you. I love him, FYI, but I.get.it. It's really, really hard.

We live with my in-laws and it's a huge blessing and I'm thankful but...when two families of any kind come together, it's challenging. For them. For us.

I can't hear God right now. I don't have anything spiritual to say this time. When I do, it's because I'm in tune with the Holy Spirit but I got nothin'. I know He's there but...

I'm sad. I'm sad that Zeke is dying. I'm sad that I am planning for what is probably his last birthday, November 19th.   Decorating for Christmas thinking it is probably our last with him.

Christmas garland above his bed where he stays during the day.

I'm sad to think of the future without him or to ever think of a time where life will be easier because then, he'll be gone. And that freaking sucks, you guys. I hate that so much. That every year, every day, although it will get easier, I'll always feel a part of me that is missing.

Meds and Christmas ornaments. They do not belong together.

It wasn't meant to be this way. Mommas were not supposed to cry over their child's disease and eventual death. Siblings were not supposed to have the pressure of naming their firstborn after their dead brother to honor him because mom thinks that would be nice to have a small piece of her dead son to always cherish.

I shouldn't have to fill out paperwork and tell a really amazing organization called "make-a-wish" what I truly believe Zeke's wish would be. He should tell them and better yet, it shouldn't be to them but to me, because he shouldn't be sick. He wasn't made to die. He was made to live.

But instead, I write this awful blog post sharing my heart at it's worst to tell you that it wasn't meant to be this way. God didn't make Zeke so he would die and that you would hear of Jesus or to show you how strong we can be because of our faith.

Zeke is sick because his luck SUCKS. Zeke is sick because this messed up world is missing it's King (who I beg to come back and often). We have turned our backs on him, we have chased after fame, success, building a happy family, doing what we love and we're constantly pushing Him to the background. We are waiting for a special moment, a fuzzy feeling, sign, a blogpost, an answered prayer- the way we want it answered, of course.

If you know the truth of Jesus and you're still living life without Him in it, pushing Him back, saying all the right things but living all the wrong ways, do you really think you'll ever choose Him? Do you really think Jesus will EVER be enough for you to turn from your ways, to take up your cross and follow Him?

And what about when life throws you something you didn't expect? A death, a disease, an affair, a lost job, will that make you run to God, or will you just blame Him and run further?

I do not know who you are, but I have heard stories. Many, many stories on how God is using Zeke's story and stirring your hearts. God is taking a mess and making it into something beautiful but He is not the creator of messes or of chaos. I hear He's building your faith or making you look into this Jesus thing in a way you had never before.

Friends, Zeke's story will come and it will go. The faith of people who are going through hard things is not your faith, no matter how much it moves you.

He's right there. Just say yes and turn from your ways and start following His ways. Jesus says, "My yolk is easy and My burden is light." Whatever you're trying to carry, to get through on your own, Jesus wants to take that off of your hands. Let Him carry the load and walk with you.  You'll get a firsthand glimpse of what this verse speaks of.

Step forward, step into the light. A light that never goes out no matter how dark this life gets. I know this because my situation is so dark right now and I'm not even at my best with Jesus but I know He's there and His light is a shinin'.

Bexley Jane Turns 2

Oh, this girl. She is such a blessing. On her 1st birthday, I was in the hospital with Zekey. On her second, I came home from the hospital with Zekey the day before.

It's been different then most 1st and 2nd years of life, but this is our life and we do our best to love with our everything all while pointing our babies to Jesus.

If you read my previous post, you can get a small glimpse into the difficulty I had in celebrating Bexley on her birthday. We were still unsure if that would be her last "normal" birthday or if she'd be free of a death sentence- Batten Disease.

Her birthday party was sweet. Family gathered 'round and we celebrated in ways most families will never know. We celebrated her and all the beautiful ways God created her to be, but we also celebrated that this would be another of many more years to come. Years full of life and growth, not slow death and decline.

Bexley Jane is one of the goofiest 2-year-olds you'll ever meet, other than my other 3 at her age ;) I'm not sure what it is about the Buchholz in me and the Holt in Andy but this combination made our kids so very silly & we love it!

Bexley is also sweet, strong, intelligent, and independent. I look forward to watching her personality continue to evolve all while Andy and I learn how to teach her the importance of Jesus in her life and how to love like Him.

Enjoy these photos. Please excuse the lack of focus but instead focus on all the cuteness.

 Today's all about me, right?

 Big brother.

 Excuse-a-me?

Zekey boy smiles! The best. 

 Cake!!

Super excited siblings.

 Nice 'robot', Cy!

 Lots of gifts.

 Brielle loving on Bexley.

 Daddy being an awesome daddy.

 Wee! It's fun to be 2!

 Cousin hugs.

 I'm getting sleepy.

Bexley Jane

We can celebrate because we have hope in Jesus. This isn't our home (heaven is coming down!) but for now, we find joy in these moments given.

Celebrating Life In Heartache- Bexley Jane

I've been keeping a secret for quite some time. A secret that no momma should have to keep. A secret that isn't fun to keep as you anticipate to eventually tell everyone. It's the kind of secret that reminds me that I'm  not the only momma who has suffered. That there are so many mommas who have cried over their child who isn't as healthy as they pictured their baby to be. And that someday, they would not be buried by their child, but would be the one to bury.

Bexley could have had Batten's. I didn't tell you because my fears were too big, my older children to vulnerable. My heart full of pain...

When Zeke had his first seizure and the many that would follow, in the back of my mind I assumed my older two were fine but I always wondered if Bexley, only 9 months at the time would eventually get whatever it was that we were fighting with Zekey.

I was always most concerned with Zekey. He was the one actually suffering. But Bexley was always only a few thoughts away. When I prayed for Zeke after this became an actual disease, as in, it wasn't just the one or two seizures anymore, I a started joining her in my healing prayers.

When Zeke was diagnosed with Batten's disease and before they knew which form he had (later finding out he has late-infantile), they said that none of my children were 100% in the clear. All I was told is that they each had a 25% chance of getting what Zeke had.

The thought crushed me to think my older two could be "uncreated" by this disease, as my husband bluntly puts it. Two sweet children I knew so well. I knew what they liked, what they hated and I had loved on them for 5 and 7 years. Then it hit me, there are mommas out there who have dealt with this already. They had children 5, 7, even 10 years old who were completely normal but have been diagnosed with Batten's disease and would eventually loose the child they once knew so well. That momma would have to adjust constantly as the child lost each milestone.

We eventually found out that Zeke had a form that was typically diagnosed or onset at from ages 2-4. This was a hope that my older two wouldn't be stricken with this disease.

But Bexley, sweet Bexley Jane had time left, to be diagnosed, to start seizing and walk this path we had walked blindly for so long with Zekey. It scared me to my core. I was constantly throwing my anxieties onto Jesus. He was the only one who could carry such a fear.

For 3 months, I waited, I cried for Zekey but now, for Bexley, too. God, please, no! Please, don't take my sweet girl from me. I said this lazily. I said this because I needed to blame someone if it happened. I wasn't thinking clearly. Thinking clearly made my mind work much harder. I had to fight what was so easy to say, that God would be the one to bring it on her. That thought is so false. God is not the creator of evil. So, when my heart was right, when my mind was clear, I just asked for healing. That she'd be healed in Jesus name.

I was exhausted, you guys. Caring and crying for Zeke. Praying for his healing but always knowing I could very easily go through this with my sweet Bexley Jane, too. It was by far the most difficult time in my life. Caring for my sick child, who I loved and was loosing all while waiting to see if there would be a repeat of this, knowing what would come for her, for our family.  I wouldn't have meds, diet change, etc. to cling onto blindly this time. I would know I could only cling to my Savior, Jesus and I'd have to learn much quicker to do that.

And it got me and my inner most being. My flesh worried and The Spirit pleaded for me. I know He did because I felt it. I was actually functioning, somehow. I was still walking, breathing and everything else that comes in this season.

Do you understand, you guys? My flesh and it's fears are so strong when it comes to my babies. I will always have to fight trusting my kids over to God because He is good but it doesn't mean they will be free from hurt, pain, disease, loss, etc.

I have to raise them up in The Lord and do my best, with all of my faults and failures with a dose of good intentions. I can pray and pray and beg and plead but trust. Always fighting to trust in God's goodness. Trust that this place, here on earth, it's not the end. Jesus won!!! Whatever heartache that those who live for Jesus face on this earth, it will be wiped away.


Bexley was not diagnosed with Batten's disease. She's going to be okay. Cyrus, Eisley and Bexley will not die because of this horrible disease. When I heard the news, I was thankful but numb. My body felt heavy. My heart beat slower. I dragged on that day.

Why wasn't I happy!? Why wasn't I celebrating like I thought I would be? I knew I was thankful. Relieved.

Wait a second! My kids each had a 25% of getting Batten's and a 25% of not getting it or being carriers. WHY?! Why the worse?

And when I had a second, I laid next to Zeke and I cried and I cried and I cried. I told him I was so sorry and that he truly is the strongest person I have ever met. I reminded him that this burden he carries isn't for nothing. Through my tears, I told Him God was strong enough, good enough to bring good out of such sorrow. His suffering wasn't for nothing. God was doing big things, just like the song I made up for him before first seizure, when all he had was a speech delay...before I had a clue as to what was coming.

Here is an amazing response from Andy's youth pastor, now the pastor of a church out in Colorado called, "Scum of The Earth Church" also the author of the book, "Pure Scum" (READ IT! It's SO GOOD!), who read my post and also Andy's post ...

"As I read this, I kept thinking, "Yes, I know this terrible truth. Andy and Bree are too young to learn this, and they are experiencing it in a depth of sorrow I have not, even at decades older." And then I thought about Zeke, who is experiencing it younger still, first-hand. To be counted worthy to share in the sufferings of Christ is a devastating fellowship of grief and loss. Aside from earthly healing, there has to be a reward of some kind, even in heaven, and perhaps yet in this life. Either that, or Jesus suffered in vain. He is exalted above every other because of his sufferings. He is one with the Father and the Spirit because He was obedient unto death. And if Zeke, at his tender age, is called to follow in the footsteps of our Lord, then he is assured of a relationship with his creator that goes beyond words, beyond thought, beyond body, time and space. I continue to pray for his healing now, and I will not cease asking our merciful Savior; but it is a special child who enters the fellowship of Christ's suffering, and he will not go unrewarded, nor will his parents. Satan has asked to sift you like wheat, but Jesus is praying for you, that your faith will not fail. If Jesus does not heal, He will be waiting for Zeke, and for you, to lead you — as a shepherd leads his sheep — on the far side of it all." -Michael Sares

Zekey will not be defeated. God wins and Zeke is a part of God's family.

For Bexley's birthday, I had a hard time celebrating. Was this the last "normal" year we had with her? Would I have to learn to how to love her through heartache like I did with Zekey?




And I enjoy life with her so much more. I don't live in fear that she may be slowly taken from me.
I can laugh a little harder, hug a little tighter but still look over at my sweet Zekey boy and long for heaven, for home. For Jesus' sweet return, to set things right.

Thank you for praying and for believing with us. Thank your for letting and often times enouraging me to just be a process, not having everything figured out. None of us fully do but the goal is to keep trying to become more like Jesus. More like who we were created to be. The world is always distracting us and I'm not exempt from this. The world is trying to make life look good enough without Jesus and it's a lie, you guys. Jesus is so vital. So good. So loving and full of more than enough grace, even for me.

Love.




                                                                

'Course He's not Safe! But He's Good.'

Trusting in God should come naturally to us because it's what our original selves were meant to do. Before Adam and Eve (and if you or I, we'd do the SAME thing!) ate the apple in The Garden of Eden, our communion with God was as it should be. There was no shame, no silence from God, nothing in their lives that would try and drag them from The Only One who would and did fulfill all desires. Everything was exactly as it should be.

Now, thousands of years of sin in the world later, we struggle to trust in even a God who can make good out of the worst of the worst. We struggle to go to Him first because we have friends and family that will talk directly to us in a way that is quick and comfortable. Little effort is needed. We struggle in our desires for wealth, beauty, simplicity, and easy life, if you will. And none of this was a part of the life before the apple. The apple that brought sin into this world and separated us from a perfect communion with God.

And it brought a world that isn't whole. Isn't perfect. There is war and there is death. There is disease and murder. This world offers only temporary or if I may put it bluntly, false hope. You cannot rest in the words of humans. You cannot truly rest in anything you have on this earth. You will not take it with you when you die. So, where is the hope in that? The treasures on earth stay here, you do not. Is this what you want to cling on to for hope? Something that fades away?

I love Jesus and I have dedicated my life to following Him. But I'm still here in this world that offers pretty things, 3 steps to a simpler life, a healthy + happy family and so there's struggle still. I naturally want these things in the most perfect of ways. I long for a simple life, nice things, a happy + healthy family but what is different in me now is Who lives inside of me.

Having asked Jesus into my heart while I was a little girl started me on a path that brought nothing more or less than you, necessarily, other than hope. Eternal hope. Hope that breaks through any suffering here on this earth. Any pretty thing that tries to turn me away from God (as it promises happiness) now has a battle to fight in me. A battle against real Truth. That nothing or no one on earth can offer what only Jesus can.

This hope can go along with trust, too. As we wait for results on genetic testing for my other three, it is by far the most difficult thing we've had to face yet. Waiting and wondering. My heart aches at the thought of any of my other three being affected by such a terrible, "earthly hope"-shattering diagnosis. My older two more than likely do not have it...but Bexley. Oh, my sweet two-year-old Bexley is at the prime age for Batten's to take over and that scares me to my core.

A quote from C.S. Lewis'  Narnia Chronicle, "The Lion, The Witch and the Wardrobe" where the children, Peter, Susan, Lucy and Edmond enter into Narnia through a wardrobe in their uncles home. Edmond has already given allegiance to the witch while the other three go to the home of the Beavers. They tell the children that they will take them to see the King, Aslan.

"Is - is he a man?" asked Lucy
"Aslan a man!" said Mr. Beaver sternly. "Certainly not. I tell you he is the King of the wood and the son of the great Emperor-Beyond-the-Sea. Don't you know who is the King of Beasts? Aslan is a lion, the Lion, the great Lion."
"Ooh," said Susan, "I thought he was a man. Is he - quite safe? I shall feel rather nervous about meeting a lion."
"That you will, dearie, and make no mistake," said Mrs. Beaver; "if there's anyone who can appear before Aslan without their knees knocking, they're either braver than most or else just silly."
"Then he isn't safe?" said Lucy.
"Safe?" said Mr. Beaver; "don't you hear what Mrs. Beaver tells you? Who said anything about safe? 'Course he isn't safe. But he's good. He's the king I tell you."

So beautifully written. So true.

A life lived for Jesus promises trials. We are not exempt from a broken world affecting us, our lives, our bodies. We are not "safe" in this world. But God is still good. He is so, so good and the eternal safety in heaven, where all the suffering here on this earth will be made right, according to God's perfect will makes the suffering here worth it.

So, is God enough for you? Is He enough to walk this life with Him, here on earth to be able to say 2 Timothy 4:7 with full confidence?
"I have fought the good fight, I have finished the race, I have kept the faith."

Or is your life, as it is, without Him too comfy and safe? Or maybe you do not feel a hope at all and you're intrigued?

Being intrigued is a beautiful thing, but actually taking a step forward, into the arms of Jesus who WILL get you through this life and all that comes with it, even with many blessings (I swear we feel blessed!!) has an eternal gift of wholeness and a perfect communion with Jesus, once again! Going back to a place like Eden.

For those who wonder how I show any righteousness. How I have peace? Please take a listen. This song explains it perfectly.

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!