Alice: Flickering

Yea, though I walk through the valley of the shadow of death,
I will fear no evil, ter you are with me!
Your rod, and your staff, they come ter me,
You prepared a table before me in the presence of my Emily’s
You anoint my head with oil,
My cup (sipping sound) runs over.
Psalm 23:4-5, Alice’s version

Twenty-nine days ago Dr. Chris told us “a month to six weeks.” We’re entering the window.

I would, of course, love to say he was way off. He would, I have no doubt, love to be proven wrong.

But doctors, though fallible, human, and hardly prophets in the truest sense of the word, are forced to live with and honor-bound to share what they know of reality based on both their extensive expensive education and real-life experience.

In other words, as much as I hate to say it, I’m not sure he’ll be wrong. At least not by much.

The word I’ve used to encapsulate my own assessment of Alice the last couple of days is “flicker.” That magnetic, infallibly loveable twinkle in her eye is still there. But not all the time. A weary, blank, far-away look occupies more time on her face now. Her sweet voice is still heard, but it is labored and slow, given in shorter, more deliberate sentences. Her wildly contagious, luminescent smile still lights up the room, but not as often.

A couple weeks back, when Jojo and I took the Christmas lights off the house, rather than stuffing them into a bin like we probably should have done, we wrapped them around the trampoline netting instead. Eight or ten strings of lights looks pretty cool at night.

Chillin’ with cousin Paul. Probably doing something she learned from “the funny guys”

The day after my last writing was a beautifully warm day and evening, and after dark, Alice wanted to go lay down on the lit up trampoline. All eight of us went out there with her. It was a warm night, and we’ve been gifted with lots and lots of blankets, so we threw a whole bunch of them on and visited, laughed, and had really a grand time together. She wanted to sleep out there too, so after Shelly and Violet, Natalie and Jojo went off to bed, she and I cozied on one side, and Emily and Kylie crashed out on the other.

It occurs to me that I should explain something. Between sleeping on trampolines, under blanket houses, good-naturedly (but rather firmly!) kicking me to the couch, one might get the impression that she’s homeless within a home! So a quick clarification: Alice really does have a bed of her own. But she’s careful not to wear it out. Her uniquely winsome presence and desirable companionship has meant she has always been not only welcome, but sought after as a sleeping buddy. Even pre-dating cancer, she would invite herself to sleep with a sibling, or they would have good-natured competitions trying to get her to crash with them for the night. She’d sleep with Emily one night (or two… Emily being the favorite and all), then on Jojo’s floor the next, then with Kylie, with Natalie, and then repeat.

Lucy recovering from her bath. Shelly takes the best pictures.

Well, that night she picked me and the trampoline. It was fun for both of us, and even though we got a few sprinkles at 4:30 that morning, she slept right through the night wonderfully well. The other two girls bailed at some point during the night, I slept some and enjoyed my Alice time.

The last couple days she’s taken a fancy to hanging out under the chestnut tree in the yard. She decided the other day when she was out there that she wanted to “cozy Ducy.” Lucy is a good dog, but hardly possesses a discriminating palette or decent sense of hygiene. That’s a fancy way to say “she stinks.” Which Alice discovered. And insisted on fixing by giving her a bath. So tonight Alice and I washed Lucy. With SpongeBob soap, no less. Then Alice threw her blanket over the dog and thought it was the funniest thing in the world.

Emptied the hot water heater, but managed to make it warm enough to have a little fun!

Alice has a little backpack that she packed up with some of her favorite toys for going to “the little house and the little water.” That roughly translates into a hotel and a pool. We hadn’t really talked to her about that or planned to do it, it was just her idea. After a week of asking Shelly about it now and then, we decided to go for it for her. Our window is closing, but she could still probably enjoy it, so yesterday we loaded up the youngest four and ran up to Duluth for a night at the Holiday Inn.

Her legs haven’t been working great, but she was super excited to kick them in the pool, which she did, and laughed and laughed when she splashed Violet, a waterbug just like her older sister. Alice loved the hot tub, especially the bubbles (naturally!). It was lots of fun and totally worth the journey. But how quickly she tires these days. A few minutes of laughter, smiles, and fun, and then she’s just out of gas. Back to the room, and SpongeBob on “Daddy’s ’puter.” We’re so grateful for so many generous people and a gracious church that make it financially and logistically possible to just up and bail out almost on a whim to maximize these days for her and for us.

Speaking of church, we’ve been able to bring her the last two Sundays. It’s her favorite, and so many of her favorite people are there. Also, maybe no connection but probably, she is showered with love and gifts when she’s there.

But last Sunday she wasn’t able to enjoy it like usual. She didn’t make her Sunday School class, which was rather significant, because that’s always been her favorite. She just ran out of gas so fast. When we got home, Michele said to me, “I think that was Alice’s last Sunday.” Somehow I knew that was probably the case, but hearing her say it out loud hit me pretty hard.

Alice and her little “Violet Wisabella.” Best friends. Almost always.

That wasn’t the only  hard thing last Sunday. Thanks to social media and blogs, Michele and I have separately been following a small handful of other families plagued by the same kind (and approximately the same stages) of cancer Alice has. And for whatever reason, God only knows, the wheels for these dear ones seemed to fall off that weekend. Little Sophia down in Springfield, Missouri, Lea in Connecticut, and Avery and Eowyn all passed away. Down in Arkansas there’s a girl named Addy. Her Daddy reached out to me several months ago to offer the hope they felt when the experimental treatments she received in Mexico seemed to be working. But he and his dear wife were crushed last week to find its effectiveness has run its course and the cancer rising up in greater and uglier ways than ever, and they’ve run out of options. Happy Mother’s Day.

It’s not easy to take when we’ve watched these dear folks and their kids live almost hauntingly similar lives to ours over the last few months, knowing our stories probably will continue to run parallel courses.

It was back in early January when Shelly came to bed and said, “Molly died today.” We never met Molly Worner, but her mom kindly sent us some of her medicine to help ease the burns of radiation at the beginning of our journey. Molly’s family’s Christmas card hung on our fridge for the longest time, and we think of them often, and they continue to give us much encouragement.

Alice in Wonderland, sitting down to tea with Steve the Rabbit. Michele’s brilliant imagination meets Alice’s cuteness and Steve’s gentle nature.

We often read to Alice from a picture Bible that used to belong to little Kathryn Parsons from New York, whose little body buckled under the weight of cancer not so long ago at the tender age of three. Her mom sent that special Bible to Alice. A couple weeks ago at bedtime (in Emily’s bed that night, as I recall) I had the pleasure to read her the final chapter, Revelation 21-22, the description of heaven, in kids language. It ends… “to be continued…” Kathryn’s mom cheers us along too.

A year ago my friend Danyel buried her little seven year old Hannah, taken by cancer. I remember my wife reading me her story at the time– I read lots of sad things I guess, that’s what happens when you get your news from the internet – but I remember tears coming to my rarely crying eyes because I knew Danyel and I knew what it was to love my girls, and my heart broke for her.

This is reality. It’s not all of reality, but it is reality. Coming back to Dr. Chris and “a month to six weeks,” I’m thankful he lives in reality and helps us know what it is, even when it’s sucky. He doesn’t get to ignore it. And we don’t either. Lately my mind has been filled with thoughts of reality. Getting my head around what really is. I’ve been to funerals where the minister talked about the spirit of the departed floating about, and how the person would always live on in the hearts of those who loved him, and I can’t help but think (hopefully not out loud), “Seriously? Is that what it’s all about? I swear you’re just making that crap up.”

Up in Duluth. I’m pretty sure this smile was in some way related to pizza.

When staring at death, and I mean staring at it like we are, precious few people are pure materialists, that is, denying any sort of spiritual reality. Suddenly we all want to believe some part of a person keeps living in a world somewhere, that there was more to them than just their broken, now dead body. Maybe sometimes matters of the immortal soul seem foggy, but death helps clarify our innate understanding that at the very least there’s some fundamental, significant difference between the person we loved and the cow we ate for lunch at Arby’s.

But I also have to say this: when I consider Alice’s smile, the twinkle in her eye, her wavy hair, the looks she inherited from me, the personality she inherited from her mother, I don’t want to be purely a spiritualist either. I love that dimpled smile, those twinkly eyes, and I’m crazy about the way she twirls her hair, not crazy how she picks her lips until they peel. The other day I buckled her in the van and she threw her arm over my neck, pulled my head down, kissed me on the nose (no whiskers there) and said, “I love you Dad. Dad? You can keep your pokeys.” I love that. Alice is more than her little body and its aversion to my pokeys, but that little body is very much her. And when it quits working, I want to know it’s going to start working again. Spirits don’t twirl hair and hate beards, at least not for the reasons Alice does. My sense from Scripture and reason is that when she leaves us, she won’t be entirely happy until she twirls those same curls and smiles with those same eyes.

Eating cookie dough. Who wouldn’t smile?

I want to be realistic because this is too important to just make stuff up so we feel better. If Dr. Chris looked at Alice’s MRI and said, “Oh she’s got 20 years left!” when he knew the truth, I’d be pretty upset with him. To be honest, I need to have the same (or greater!) level of confidence in what happens to her, to me, to anyone who crosses that river into eternal life. I want to be confident my view of reality is a little firmer than making up a bunch of nonsense about floating spirits and the dead living on in my heart. I don’t even know what that means! Much less do I have any faith that it’s as real as my kitchen table. If Alice’s life after death is contingent on her “living on in my heart,” she’s got a sketchy future, because my heart is a rather unreliable fountain of eternal life!

Reality. No games, no fairy tales. Truth. Something that won’t disappoint, something that will actually turn out better than I could have even hoped for. This is my daughter; it’s going to be me someday. It’s going to be all my kids someday. Hopefully 80 years from now, but it’s going to happen, sadly. When it happens, what happens?

We cling to Jesus. We do our best to steer Alice to Jesus. He offers us hope for both spirit and body. He’s been dead; He’s come alive again; He’s still alive, and will be forever, just like I want Alice to be. I’d love for her to live to be 95. I’d far more love for her to just plain never freaking die and live in a better place than here. Jesus can do that. He promised he would. He died to make it possible. He lives because what is possible is now reality.

Chilling with Natalie and Violet under the chestnut blossoms

If the Bible isn’t true, and if Jesus isn’t raised, we Christians are the biggest fools in the world, in for the biggest disappointment ever. I get that. But it is true, and Jesus’ tomb is empty, so we have reality, a good, solid, hopeful reality to enjoy. So we cling to him, he’ll not let us down.

And now we walk our little Alice through the valley of the shadow of death. We see the tracks of those broken-hearted parents who have walked this road before us, and we hear their voices calling to us, “keep going, you’ll make it.” Bless you all for your help. When we reach the end, we can’t take her across the river, but we can to the shore, put her hand in His, and kiss her goodbye, for a little while.

Still, tonight it’s not yet goodbye, just goodnight.

We have been recipients of some incredibly thoughtful and meaningful gifts particularly in the last few weeks, and we want to acknowledge them as best we can, which is never as good as we want, or you deserve. Thank you for sending pieces of your hearts to Alice and to us.