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....

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 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 I love him, FYI, but 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'.

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.

 Today's all about me, right?

 Big brother.


Zekey boy smiles! The best. 


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.