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."
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.