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'.