Hospice, they told us this would happen. With children who are dying, their health goes up and down and our emotions would go right with it. It has been a constant need for adjustment with accepting the truth of what the latest ‘norm’ for Zekey is, what he is able to do and feel and express but the latest is by far the most difficult.
I had just posted a video on Instagram of my sweet Zekey-boy on one of the best days he has had in awhile. It was just me, Zekey and Bexley on a Sunday morning and he was full of joy and peace. I wanted to capture it for myself and for all of you. I thought maybe this would mean we could go on the make-a-wish trip with him that is coming up in May – a trip that would help bring so much healing for my other kids especially. This would be their last ‘horrah!” with their brother. (I’ll give more details, soon and how you can join in helping us with that!) But…
Twenty minutes after that video was taken, he started down a path that has been full of intense body jerks (myoclonic jerks) where his body isn’t able to rest unless he gets valium and morphine to calm him. Even with those meds, given every 1-2 hours depending, we have to hold him down or hold him tightly in order to let his body fall asleep and get the rest he needs. He also has a cold and isn’t able to clear his throat which could lead to pneumonia and this is the most common cause for death in these kinds of diseases.
Just last week Andy and I were talking about how these constant changes make us feel. I told him I feel as though I’m on a ship in an angry ocean and the only place, literally, that I can look for stability and comfort is Jesus (stories where God uses Zekey’s story for redemption in your lives is always a bonus, too). Nothing else satisfies. Nothing else gets me through.
Not everyone is going though this kind of suffering as we, and some in the world deal with much more but we all live in this broken world and will not be fully satisfied until our new home, heaven comes down.
Do you ever get to that place of desperation for Jesus where you finally realize nothing else can satisfy? Maybe you are in the thick of mothering little ones, maybe you’ve lost a job, a loved one. Friendships and or relationships are taking a turn for the worse. Maybe your addiction, you’re realizing, continues to not satisfy and you want something true and pure and holy that can fill that God shaped hole in your heart. Whatever it is making you realize this, it usually means you are so deep in the valley, you can only look up.
But, it’s a great place to be in our relationship with Jesus, realizing our desperation for Him. This is the blessing in the suffering. The closeness of our Heavenly Father.
After I told Andy that life feels like we are on an angry ocean, I later pictured Peter in Matthew 14:22-34 where the only thing keeping him from drowning in the water, the waves and wind engulfing him, was to keep his eyes on Jesus.
This is where I am. When I let anything grab my attention, other than Jesus, I start on a path of spiraling downward. The wind and waves of death and loss laugh in my face. Eternity? I have full peace where Zeke will go and all the wholeness I will not know until my day comes, but the death and the ‘no more Zekey to hold’ makes me crumble.
So, I find safety in Jesus. I find rest in Him. I find freedom to cry out and beg for mercy and peace and rest.
These same things are offered to all of us. These are the kinds of things Jesus provides in the midst of our chaos. No matter how deep you are in the valley,no matter how high the waves are around you, you can find Jesus there.