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Wednesday, February 5, 2014
Friday, January 3, 2014
New Year + Tragedy and Triumph.
New Year's Eve, Andy and I were given the green light to go out and celebrate. We got so caught up in the day to day that we didn't plan. As a gal who thrives on spontaneity, I was okay with it. Andy, not wired this way, was also okay with it because, well, we were getting a date and we would be together!
I dressed up with a top he surprised me with on Christmas, accessories, nude lipstick because red lips scare him from kissing me and I surely didn't want that!
I loved waiting 45 minutes to be seated in the 'standing room only' atmosphere. Andy just held me close and escaped to his phone (only when we were not in conversation).
When we were finally seated, in the perfect little back room (where it was quieter mind you), we ordered our favorite appetizer, drinks (sangria and coke. ha!) and main dishes.
Now it was time to talk real talk. It started out kind of somber- I mean, this year isn't a year we can hope for a good one like many people, or even the way we did in years past. This new year was probably going to be the most difficult one yet. We could lose our Zekey and if not him fully, more and more of Zekey would be sucked away from us, from himself.
We quickly decided that Zekey's disease and all the heartache that comes with it, wasn't going to be what we dwelled on in conversation that new year's eve. Not that I have to explain but, let me explain. We were not trying to avoid what is very real in our lives, but we are faced with that reality almost 24 hours a day and we rarely talk about the exciting things that are coming, too. It's a strange thing to be excited and hopeful at the very same time our son is dying.
I dressed up with a top he surprised me with on Christmas, accessories, nude lipstick because red lips scare him from kissing me and I surely didn't want that!
These bangs be growin'.
"I'm in love, I'm in love and I don't care who knows it!" -Elf
We get snow in Ohio...loving it!
I loved waiting 45 minutes to be seated in the 'standing room only' atmosphere. Andy just held me close and escaped to his phone (only when we were not in conversation).
When we were finally seated, in the perfect little back room (where it was quieter mind you), we ordered our favorite appetizer, drinks (sangria and coke. ha!) and main dishes.
Now it was time to talk real talk. It started out kind of somber- I mean, this year isn't a year we can hope for a good one like many people, or even the way we did in years past. This new year was probably going to be the most difficult one yet. We could lose our Zekey and if not him fully, more and more of Zekey would be sucked away from us, from himself.
We quickly decided that Zekey's disease and all the heartache that comes with it, wasn't going to be what we dwelled on in conversation that new year's eve. Not that I have to explain but, let me explain. We were not trying to avoid what is very real in our lives, but we are faced with that reality almost 24 hours a day and we rarely talk about the exciting things that are coming, too. It's a strange thing to be excited and hopeful at the very same time our son is dying.
So we went at it and talked of the exciting things coming. Andy was approached by a book publisher to write a book proposal! How cool is that?! He may very well write his first book this year! So amazing!
And I...well, are you ready? I have been given an amazing opportunity to touch the lives of women across the globe with hope all while doing something I've wanted to do for 15 years. I was asked, by the amazing Amber from Beautiful and Beloved, to design clothes for a group called PURNAA where they rescue women from sex trafficking, bring them hope by teaching them the trade of sewing and in an environment where they will not only thrive, but with every stitch, they are empowered to become free from the life (if you can call it that) they lived as slaves.
Can we say humbled? God is taking a deep desire of mine, a gift He has given me and is using it to bring life and hope and freedom to women who have felt none of these beautiful things before PURNAA.
It took a few months to accept this as an actual call on my life. I still struggle with wondering if God is really going to use little ole me, to do what I LOVE and bless the lives of women I can only PRAY I will hug someday.
I cannot do this alone. My dream of designing clothes has been proven quite small before I heard of PURNAA. They are taking the fashion industry (you wear clothes, right?) and using it to bless others BIG TIME.
Andy's working on my new blog. I'm working on new clothing designs. Things are happening.
So, how can you join me right now?
Pray with me. Pray God would do big things through me and my up-and-coming clothing line! Pray that I would find the right ways to share this news with businesses and people who are willing, able and feel called, would help support the financial investment my clothing line has in starting up.
Those of you may contact me via email: Breena.Holt@gmail.com
*I was given my first financial gift by THE Lady Dianna who is doing amazing things with her God-given gifts (and SO FREAKING TALENTED!!!) and wrote me the sweetest letter, via snail mail, to encourage me and poured out such words of wisdom! I will carry it with me wherever I go for those obstacles that are sure to come.
Please pray that I'd make my big picture a reality- a really fun launch party, getting boutiques to buy the clothes I design and, even your willingness to consider buying from my line knowing not only, ahem, will the clothes BE.AMAZING. but more importantly...
With every purchase you are giving life and hope and freedom to women who have never felt such beautiful gifts before now.
I'm excited- REALLY excited, but I am scared. All of the "what ifs"! I do not plan on dwelling on my fears but run toward changing the lives of women for the better all while God leads and guides me through it.
Pretty cool, huh? Thank you for your following me through.it.all. My sweet readers, you have walked through all of the good and terrible with me and I'm so thankful. THANK YOU!!
And I...well, are you ready? I have been given an amazing opportunity to touch the lives of women across the globe with hope all while doing something I've wanted to do for 15 years. I was asked, by the amazing Amber from Beautiful and Beloved, to design clothes for a group called PURNAA where they rescue women from sex trafficking, bring them hope by teaching them the trade of sewing and in an environment where they will not only thrive, but with every stitch, they are empowered to become free from the life (if you can call it that) they lived as slaves.
Can we say humbled? God is taking a deep desire of mine, a gift He has given me and is using it to bring life and hope and freedom to women who have felt none of these beautiful things before PURNAA.
It took a few months to accept this as an actual call on my life. I still struggle with wondering if God is really going to use little ole me, to do what I LOVE and bless the lives of women I can only PRAY I will hug someday.
I cannot do this alone. My dream of designing clothes has been proven quite small before I heard of PURNAA. They are taking the fashion industry (you wear clothes, right?) and using it to bless others BIG TIME.
Andy's working on my new blog. I'm working on new clothing designs. Things are happening.
So, how can you join me right now?
Pray with me. Pray God would do big things through me and my up-and-coming clothing line! Pray that I would find the right ways to share this news with businesses and people who are willing, able and feel called, would help support the financial investment my clothing line has in starting up.
Those of you may contact me via email: Breena.Holt@gmail.com
*I was given my first financial gift by THE Lady Dianna who is doing amazing things with her God-given gifts (and SO FREAKING TALENTED!!!) and wrote me the sweetest letter, via snail mail, to encourage me and poured out such words of wisdom! I will carry it with me wherever I go for those obstacles that are sure to come.
Please pray that I'd make my big picture a reality- a really fun launch party, getting boutiques to buy the clothes I design and, even your willingness to consider buying from my line knowing not only, ahem, will the clothes BE.AMAZING. but more importantly...
With every purchase you are giving life and hope and freedom to women who have never felt such beautiful gifts before now.
I'm excited- REALLY excited, but I am scared. All of the "what ifs"! I do not plan on dwelling on my fears but run toward changing the lives of women for the better all while God leads and guides me through it.
Pretty cool, huh? Thank you for your following me through.it.all. My sweet readers, you have walked through all of the good and terrible with me and I'm so thankful. THANK YOU!!
Sunday, December 22, 2013
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.
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
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)
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.
Friday, November 29, 2013
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....
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....
Sunday, November 10, 2013
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.
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.
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'.
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.
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'.
Tuesday, November 5, 2013
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.
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.
Wednesday, October 23, 2013
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.
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.
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