“I didn’t think I could love her more,
but now that her eyes are crossing and she can barely move…
I love her more.” – Michele
We rejoice in hope of the glory of God.
Not only that, but we rejoice in our sufferings,
knowing that suffering produces endurance,
and endurance produces character,
and character produces hope,
and hope does not put us to shame… Romans 5:2b-5a
It’s hard for me to write if I feel that nothing particularly noteworthy has happened worthy of recording or reading. It’s not that nothing has happened, it’s just that what is happening is moving along in slow motion. Of course, in retrospect we may look back at these days and feel they were like living in a hurricane. But as it stands now, it’s just a grueling process. The number of times we thought it would be over within a matter of days is only equaled by the number of times we felt it would drag on in perpetuity.
The word I used to describe Alice a few weeks ago was “flickering.” Tonight I might use the word “fading.” The light in her eyes continues to dim. Her legendary smile, while not yet entirely relegated to the realm of memory, is but a shadow of its former glory.
However, I want to take a risk and rather than using safe and benign description of “fading,” the word that more fully encapsulates her in these moments is “dishonor.”
I take the word from the Apostle Paul who, referring to the death and burial of a Christian said, “We are sown in dishonor…”
Alice’s tumor is not only sucking the life out of her, it’s stripping her of her dignity. She tries to draw pictures like she once did, but she’s frustrated by her inability to make her unsteady hand do what she wants it to do, and she hates that her drawings aren’t nearly as good as they used to be. She needs help in the bathroom. She drools, a lot. Every word is laborious, slow and increasingly unclear. Her once sparkling eyes are crossed and she struggles to focus them (although… eating nachos this afternoon she managed to spot on one of her chips a molecular sized piece of ground beef that had to be removed before she would eat it!) And I don’t think it has gone unnoticed that her 9-month-old sister is more mobile than she is.
This slide into dishonor is hard to watch. After all, I deeply desire her to be honored, to be glorious, free from being humbled by a disease we can do nothing about.
On the one hand the worse she gets, the more love and compassion we feel for her. It doesn’t matter how weak she is, how sparse the laughs or slow the words, our love transcends those things, is even intensified by them. There are hidden dimensions to love that can only be revealed when a certain light shines. As Michele said, we “love her more,” because we love her in new and different ways we simply couldn’t before. There’s something to be learned about God’s love for us by observing Michele’s love.
But on the other hand, if we were able, of course we would restore her beauty and her abilities to their original form. So there’s both a sense in which it doesn’t matter that she is being dishonored by cancer, but there’s also a sense in which it very much does matter, because we want the dishonor gone and the beauty of vitality back.
After all, every citizen of heaven will be made glorious, honorable, and beautiful. Ugliness, deformity, incapacity will all be eternally transformed into stunning and satisfying perfection. Imagine an eternity of life with flawless beauty, untouched by age, sorrow, or disease. Dignity, honor, and beauty matters to God. Dishonor will be banished in heaven. Those sown, buried in dishonor, says Paul, will be raised in glory. That means Alice’s twinkle will be back; the laugh will again echo, the smile will once again reproduce itself on every face that witnesses it.
But tonight she is still with us. And we’re glad. We get to hang out under the chestnut tree just a little bit more. How much longer, who knows. Maybe days, maybe weeks. Tuesday will mark the end of week six since the 4-6 week prognosis. Alice is very, very tired. Her breathing is getting faster, her heart is working harder. She is getting weaker. I wish it wasn’t so.
This week I sensed the entire family was getting really weary of the battle. This is a hard thing to live through day after day. So I wanted to try to provide some bit of relief. You know, get out of the house and do something fun. But it dawned on me with force and frustration that Alice really can’t get out anymore and that makes me incapable of doing those diversions that sort of refresh our energies. There’s not much that’s “fun” for her either out and about or right here at home. She may be able to muster up the strength to enjoy something for a few moments, but that’s about it. She’s just tired. Tonight she had a few moments of fun sitting on the trampoline with a marker scribbling on everyone else’s face or arms or legs. Kind of a shame we’ll have to wipe it off.
Michele and the kids continue to amaze me. I’m in awe of Michele’s strength in these days. She maintains her poise and stability while loving and hurting more deeply than I can even imagine. The kids have adapted so well to this alternate universe we’ve found ourselves in the last eight months. I am so very proud of all of them. God give us continued grace.
I remain confident that God has heard our prayers. I hope to write about that soon. I remain adamant that the day is coming when we will see with eyes filled with tears of gratitude that this is the best thing that ever could have happened to her, and to those who love her. It’s really the only way to make sense of the inescapable three truths that nothing happens except that which God is in control over, He loves her more than we do, and He is perfectly capable of fixing her at any moment (and has been begged to do so repeatedly and loudly by a great multitude!) and hasn’t yet chosen to do so. For those God loves, all things, even and especially the bad ones, work together for good. He loves, and He works. That has to be enough for us for now.
If I think of what I would do for her with my limited love and limited ability, imagine what God is doing and will do for her with His infinite love and infinite abilities. And for that reason, we trust Him with these moments of dishonor. They are temporary. They are producing for her an eternal weight of glory. I’m not crazy about the process, I’ll admit. But I am really excited about seeing what God makes of it.
We continue to be the recipients of unbelievably kind, gracious, and thoughtful generosity, more than we could ever hope to begin to acknowledge. A few months ago, I used to take Alice with me into the Wells-Fargo in Cambridge when I had to do something at the bank. She only accompanied me inside because she knew they have suckers. It turns out that the lady who helped me set up Alice’s savings account there is also my neighbor. So after I got to know Tricia a little bit, I would send Alice into her office to steal suckers whenever we went. For the last six weeks, Tricia and her kids have dropped a sucker in our mailbox for Alice every day without missing a single one. Amazing. If you can’t find a pink sucker at the bank, it’s because Alice ate them all. Tonight, I had to say that Alice just can’t do suckers anymore. I hated having to do that!
For all the cards, letters, and gifts, on Alice’s behalf, I offer you her thanks. I only wish you could enjoy her enjoying them. For all the prayers for her and for us, thank you. We need them, and they buoy our hearts. To our Lewis Lake family, and Pastor Bob, who continually support and encourage us along, who gave their hearts to Alice knowing full well it might break them to do so, thank you.
note: the lack of pictures is my way of protecting Alice’s honor. I want to acknowledge the reality of her condition without flaunting it, which I hope I have done. I’m trying to follow the example of the greatest Author limiting the description of his Son’s greatest moment of shame to the simple words, “they crucified Him.” Real, but not embellished.