I’ve had trouble finding adequate words all along this journey, but it seems to increase in difficulty each week.
It’s hard to believe it’s been over a month now since Tage was admitted to Riley and our world would be forever changed. Unfortunately, the doctors have been accurate, and we have begun to see some decline in Tage over the past month. He has good days and not so good days, but Josh and I are aware that despite our best efforts to care for him, he continues to progress down the path of Leigh’s Disease. More drool, more tremors, more sleepiness, more agitation.
The hardest part of the week was Wednesday night. I’ve had to sit on it for these past few days before I could even try to sit at a computer.
A friend of ours works with the IU Hospice, and he offered to come talk with us.
Umm, no thank you. That was my original thought. I’d rather just crawl in a dark cave until all of this is over. If it was just me, I might do that. But, there’s Tage. We have to fight for him, whatever that may look like.
So, we sat at our kitchen table with our friend, a hospital chaplain, and a pediatric hospice nurse. They told us we don’t have to use the “h” word (hospice), and we can just say that she is a nurse. But who would be we fooling, I thought.
I can think of another h word that comes to mind in this season. And it’s not ‘heaven.’
This season is a never-ending torture. To know your child is dying, to watch their suffering increase, to be able to do nothing to stop it, and to just have to wait it out with them, to wait for Death to come day after day, wondering how many more days you might get to hold him in your arms, knowing that now and forever your life will be marked by this painful scar of a love lived and lost in a way you never imagined for yourself in a million years. I’m still in shock. I’m still wondering how parents continue living after something like this?
(I told God this morning that I do still 100% believe He can work a miracle, and I still am boldly praying that He does. But I also told Him how I don’t want to be blind-sided either. If Tage is not going to make it, I want to have a plan of how to make him most comfortable. That’s how I can fight for him, too.)
There we sat at the table,talking about “that day” and what it would look like leading up to that day. We talked about what we would see as Tage declines, what to look for, how the pediatric hospice service can provide a nurse that comes to our house and helps me with him as he declines, how they have medicines they can order, how I can call them any time and someone will come if I need it.
But the low point of the entire evening for me was when the nurse said there is a possibility of seizures (which I knew). But then she told me that I could keep medicines for his seizures in our refrigerator which they would instruct me on how to use (didn’t know that), but if ever the seizures became so severe and there was no break between them, I could call for help…well, that’s when I lost it. No break between them??
I heaved as I told her I am not strong enough to administer medicine to my child while he continually seizes. I know people do it, but that’s not me. I couldn’t bear it. I absolutely could not bear it. I’m not sure I can live with those images in my mind.
That’s when she told me they could always send help. And we could also always take him into the hospital. I replay that conversation, and I know that parents before me have done it. But I’m still looking at God and asking, “What made You think I was ready for this?! How could I ever be ready for this?”
See what I mean by hellish? It’s a twisted torture at times. Parents aren’t meant to plan for their children’s death. It’s not supposed to be this way.
But if there are no cures, I would rather hold him in my arms while he sleeps warmly against my chest in our living room than watch him sleep attached to wires in a cold, hard hospital bed.
What? Am I really having these conversations in my head right now?
It’s not helpful to make a list of all the troubles and tribulations you’ve had in the past six years, but Josh and I did it. This one tops all the others for sure. I took that list to Jesus in prayer this afternoon, as I drove home in tears from a gathering with friends that was supposed to be a happy time. I started crying and had to leave early.
“Jesus!” I cried out as I drove down Springmill Road and passed the hospital where Tage was just born 7 short months ago. “I need You! I can’t do this! What did I do? Why is this happening to us?”
I know this isn’t punishment. The Enemy wants us to believe that, but we know that’s not what Jesus teaches. That’s not God’s style. When sin invaded the world, its consequences became enmeshed in the fabric of the universe…and in human genetics…and even in the tiniest parts of His creation like mitochondria.
I know this isn’t punishment because He brought to mind the narrative of Job. Job was a good man, a God-fearing man who was “blameless and upright; he feared God and shunned evil”(Job 1:1). And yet, if you know Job’s story, you know that he lost all of his oxen, donkeys, camels, sheep, servants,and all of his children.
It was not a punishment. This is not the end. I agree with Job in chapter 19 when he says, despite all his trials, “I know that my redeemer lives, and that in the end He will stand upon the earth.” The war on death has been waged. We know who wins.
But what until then?
Today, I received my own copy of the book Streams in the Desert. I knew it was a classic, but I had never read it before. Curious, I opened to a random page. February 19:
“A child of God was dazed by the variety of afflictions which seemed to make her their target,” it said. Umm, yes. Then it continues, “Walking past a vineyard in the rich autumnal glow she noticed the untrimmed appearance and the luxuriant weather of leaves on the vines, that the ground was given over to a tangle of weeds and grass, and that the whole place looked utterly uncared for; and as she pondered, the Heavenly Gardener whispered so precious a message that she would fain pass it on:
“My dear child, are you wondering at the sequence of trials in your life? Behold that vineyard and learn of it. The gardener ceases to prune, to trim, to harrow, or to pluck the ripe fruit only when he expects nothing more from the vine during that season. It is left to itself, because the season of fruit is past and further effort for the present would yield no profit. Comparative uselessness is the condition of freedom from suffering. Do you then wish me to cease pruning your life? Shall I leave you alone?” And the comforted heart cried, “No!”
I want the Lord to expect more from me. I want to still be in the season of producing fruit for His Kingdom. I do not desire to be useless to Him. If He needs to prune us so that we may bear much fruit, I trust Him with His knife.
Josh and I don’t like how this pruning feels, and perhaps no one would fault us if we should turn from Jesus. But we cannot.
We are like the disciples after Jesus preached some things that were very hard for people to hear, and “many of his disciples turned away and deserted him. Then Jesus turned to the Twelve and asked, “Are you also going to leave?” Simon Peter replied, “Lord, to whom would we go? You have the words that give eternal life” (John 6:66-68).
We have nowhere else to go. Jesus is our only Hope. We know He is working in our lives even though it seems absolutely insurmountable ninety-nine percent of the time right now. We don’t get it. But we know He does.
He’s going to do good with this. There will be pruning. But there will also be fruit. And in the end, Jesus wins.