At this point, we don’t have much more to say as far as Alice’s condition. Writing helps sort out the scattered thoughts of a beleaguered mind, so what follows is more therapy than journalism.
We’re home, awaiting the pathology results and then the process of working through treatment options. More thoughts on that a little later. I call it “limbo-land” because we’re sort of in our old “normal,” wondering what the new “normal” will be like when treatment starts. In the meantime, we talked with her doctor and reduced her steroids to half of what they were, and that’s having some favorable results.
Alice effortlessly ate 4 boiled eggs for lunch today. To say she’s been really hungry is like saying Spurgeon was an ok preacher. She’s been voracious. Hopefully the reduced steroids help curb some of that. Our biggest challenge is trying to help her not eat constantly, especially when everything in us wants to dote on her every wish.
Our church family has been incredible. Saturday night Natalie and Jojo went with me to a special prayer meeting the church was holding. They weren’t expecting us, but we wanted to go and pray with them. We were stunned and amazed to find 30 people gathered together, with tears in their eyes and deep affection in their hearts, as they passionately prayed for Alice and our whole family. We are so deeply moved by the love these folks have for us, a family of relative strangers.
Sunday we returned to church, this time as a family, all 8 of us stuffing in our 7 passenger van to enjoy something of a “normal” Sunday morning. As an aside, I don’t plan ahead well, even when I know mathematically that child #6 is going to mean we don’t have a vehicle we fit in. But my moderate disregard for vehicular seating safety opens up options that get us all squished in!
Mostly we went because we needed to worship. We needed to give thanks to God for His grace, we needed to express our dependence on His wisdom. We sang “Remember Your promise, O God. Your grace is enough.” We needed that.
We were greeted with ribbons – almost everyone was wearing one – yellow with a gray stripe. Gray for brain cancer, yellow for pediatrics. We’re so new to the church, I doubt I could pick Kim Swenson out of a police lineup, yet it was she who loved us enough to make 150-200 ribbons to minister to our hearts and remind the people to pray for Alice. God bless you dear sister!
Pastor Bob preached on “Be anxious for nothing, your Father knows what you need.” It was awesome, and a great encouragement for our weary souls.
It’s been good to be spending these last days with Alice, Shelly, and the family, unencumbered by the typical attention-grabbing, time-consuming tasks of normal life.
In times of upheaval and uncertainty, it seems our minds try to take the pieces that compose the puzzle of life and somehow figure out how they all fit together to make a bigger, more beautiful picture. We need to know that all the little pieces, especially the ugly ones, are both necessary and useful. And I have to say, there are some really big and ugly pieces we just found in our puzzle, and we are struggling to find how they could ever be part of something pretty. We didn’t want these pieces. We still don’t, to be honest. In the first days, we all said at various times we hoped we’d wake up and find it was all a dream.
But it’s not a dream; it’s not even a nightmare. This is happening, this is a part of our life. We believe the Great Puzzle-Designer knows how to make a beautiful puzzle even with really ugly pieces. After all, what is the cross of Christ but an ugly yet necessary piece woven into the tapestry of the most beautiful story of all? If the execution of Jesus, attended by the sobs and tears of Mary, could result in such glory, might not a tumor in the brain of my little girl, attended by the tears of my beloved wife, somehow result in something so wonderful that we’ll actually, meaningfully, sincerely say, “Thank you Father, for crafting such a beautiful puzzle out of the pieces of our life!”
The Apostle Paul wrestled through the reality of life in a world where things end badly for everyone – no one escapes the grave – and what’s more, almost without exception, we don’t reach the grave without a significant amount of trauma en route. Yet God says through his pen that “the sufferings of this present time are not worthy to be compared to the glory that is to be revealed.”
If that’s true, (and it is!) we’ll be ok somehow. The challenge, of course, is actually believing it, when I’m staring into the eyes of my little girl, feeling like she’s got a bomb in her head exploding in slow motion. My head believes; my heart is sometimes slow to catch up. How can this kind of suffering that we’re going through ever be worth it?
The answer that comes to mind so often is this: I don’t know how it could ever be worth it! Anything that worthy is entirely beyond the realm of my experience. I’ve told a couple of people, “If losing Alice meant world peace, leave the world at war, and leave me Alice!” I can think of nothing that would make this “worth it.” But I believe in a God who doesn’t show all His cards, and who has surprises in store for Alice, and for the rest of us, that actually will make this ordeal, however it finally resolves itself, “not worthy to be compared” to the ultimate resolution. After all, isn’t that the point of the phrase “the glory to be revealed?” It’s not revealed yet. We don’t know what the results of this suffering are. We must trust that when it is, we’ll actually be jubilant about it.
But honestly, sometimes that seems far off. So we pray, God help us trust. We believe, help our unbelief! It’s one thing to believe when it doesn’t cost much in the way of emotional output; it’s quite another to believe when we’re trying desperately to accept the fact that this piece of our puzzle has to fit in somewhere.
We want truth. When the sun is shiny and the biggest problem we have in the Reed house is the fact that the eggs coming out of the coop are plastered with crap, cutesy coffee-cup phrases and bumper-sticker Christianity seem so charming. Chicken soup for the soul is fine, if your soul only has a minor cough.
We don’t cling to the Bible as a crutch. God is our witness, we never did. We believe it because it’s true, and if it wasn’t, we’d drop it and go on to something else. I’m an optimist, and I hope for the best, but so help me, I’ve got no time for living in a dream world of make-believe. But we are now living in a world where hard truth is hard to come by. Our world is full of maybe, probably, might happen, should, most likely, and wait and see because we don’t know. We’re looking at a future that’s incredibly foggy.
So we need something to grab on to that doesn’t move. “God loves Alice more than we do,” seems to be one of those helpful rocks on which we are anchoring our souls. He loves her unlike we would if we were Him, that’s a fact, but that doesn’t mean He must love her less.
This thing with Alice hurts. I like to think I have dragon scales covering most of my soul; not much hurts. But God is a sharpshooter, and he doesn’t bounce arrows off the scales, He drives them into the heart, and they hurt. I used to sometimes imagine what it might be like to go through something like this, but it never hurt this bad. In my mind’s eye, all the theology came rushing in, and I faced the darkest of foes with a smile on my face and a song of victory on my lips. What a dope. The theology is still there, and I need it, and it’s holding strong. The song is still there, and I sing it, and my soul is moved. The comfort of brothers and sisters is there, and we are swimming in an ocean of affection we never knew existed.
But it still hurts. Bad. Deep. It hurts when I look at Alice and see the effects of this tumor on her face and in her body. It hurts when I look at my wife and see the pain in her heart. I like to be Mr. Fix-it for her. And I can’t fix this one. I like to be Mr. Homeland Security, but this snuck in and I couldn’t do a thing to stop it. The feeling of helplessness sucks.
God give us wisdom. We live in an age of information. But it turns out, not all available “information” agrees with itself. God help us to navigate our way through. One expert’s cure is another expert’s poison. Amazingly, none of them ever seem to fail! I’ve heard of so many successes, but only privately have we heard a couple of times, “we tried this for our daughter, but it didn’t work, and we lost her.” Strangely perhaps, those stories of “failure” are the most comforting. In the glamorized internet world where the successes are set before us, tantalizing us with promises of the weird being miraculous, and the miraculous being assured, the thought that we might be the only ones who totally screwed up and didn’t do what we should have done, to the detriment of our little Alice is really a heavy burden.
We find ourselves living in a day when it is more or less “common knowledge” that every problem has an avoidable cause and available cure, you just need to know what to avoid in the first place, and where to look in the second. The difficult downside to every solution that’s proposed to us (and we can’t try them all!) is that it leaves us with the feeling that if we choose the wrong one, we’re ultimately to blame for the outcome. It’s complicated further by the suggestion lurking just below the surface that if we’d only led the right lifestyle in the first place this never would have happened to begin with.
I’ve never been a fan of the Gospel of Nutrition, and even though justification by righteous eating alone (I believe the latin is sola non-deliciosa) may soon find itself as a 6th pillar of the Reformation, I’ve never quite bought into it. I once wrote an essay about it (which, if you like, you can read here), and even though there are those moments when I wonder if there’s something to the notion that we brought this calamity on our own heads by riotous living in the frozen pizza aisle or excessive revelry under the Golden Arches, the comfort I have is simply this: There is ultimately no hope of anything beginning or ending well ever outside the grace of God, and if God’s grace is greater than my sin, it should be able to handle all our other challenges, which are minor by comparison.
Therefore, God give us grace. And as we say, God help Alice.
Picture credit to Alice. She used my phone this morning for a few “selfies” sitting in the front seat of my car. (I know, I know… at least we weren’t moving at the time…)