I believe that I shall look upon the goodness of the LORD
in the land of the living!
Wait for the LORD;
be strong, and let your heart take courage;
wait for the LORD!
Sunday night. The end of another day. It’s nearly bedtime. Alice and Shelly are snuggling on the couch, watching the funny guys start a food fight in high society. Seventy years later, pies to the face are still funny.
It’s been a good, good day. Emily and ten other kids from church were confirmed, and I couldn’t have been prouder of my (once) little girl reading her treatise on the Trinity before a full sanctuary.
After the service little Lindsey, about 6 years of age along with her little brother Brant who attends Alice’s 4-5yr old Sunday School class came up to me holding a yellow can that said “Alice’s lemonade stand” on it. Inside the can was $120 they’d made selling lemonade, and they wanted to give it to Alice. What a beautiful moment. Their mother was just a step behind them, crying what I presume was a beautiful combination of tears of joy over her children and sorrow for mine. I felt the same. These really are the best and the worst of times, and this moment illustrated it beautifully. So Lindsey and Brant, you’re amazing. I squatted down to look the two young ones in the eyes and thank them, gave Lindsey a hug, but Brant wanted nothing to do with that. He’s not a hugger, Lindsey informed me. We did a fist bump instead. Love those sweet kids. Surely the Father in heaven sees the love and compassion these little ones have poured out on our Alice, and His heart is not unmoved.
When last I wrote, Alice was more or less holding steady. Eleven days later, that’s still true.
I don’t understand the workings of the brain, and even less a brain that’s under siege from the worst grade of the worst tumor and the lingering side-effects of radiation, so I don’t completely understand this second brief little “grace period” we’re going through, and I don’t think anyone knows how long it might last.
In the days following her last MRI, her health was failing precipitously. It was almost an hourly progression of symptoms. We went into a crisis mode. It’s hard not to when you’re sent home with such a brief window of time, rapidly failing health, and as a cherry on top, a bottle of concentrated morphine. This was followed by a visit from hospice, then a couriered delivery of seizure and anxiety meds that now occupies the space in the fridge just behind the milk.
But for the past two weeks now, from the outside anyway, her condition seems frozen in time. It’s a strange thing to live through. When she was failing so fast, we said to each other “four to six weeks? It seems like she won’t survive a week!” A person involuntarily holds his/her breath when witnessing a calamity. And as Alice failed so fast right before our eyes, we held our breath. And held it. And held it. And after awhile, like after two weeks, it’s hard to hold your breath anymore! It’s a strange kind of fatigue.
Forgive me if this sounds a bit insensitive, but maybe it will help illustrate our situation. In the last few months I’ve occasionally described our situation to friends this way: It’s like our daughter is having the time of her life playing in the street, and there’s a truck about to run her over. Her shoes are frozen to the road; she can’t get out of the way. We’re standing on the sidewalk, we know it’s coming, but are powerless to help, and not really sure what exactly to say to her about it. (I suppose here I could insert that many friends, acquaintances, and strangers have passed by and suggested we try various crowbars, spatulas, hot air balloons, or shoe-removal experts from around the world that might help get her out of the road and out of danger – and it’s not easy dealing with the reality that none of these could or would help.) We hoped and we prayed that the truck wouldn’t come. But it came. And it started to hit her. And then it suddenly stopped and the driver decided to eat lunch. At some point it starts moving again. We just don’t know when. Sooner rather than later I suppose. It all leaves us with an indescribably confusing and conflicting set of emotions. Again.
But those things aren’t why I really wanted to write tonight. They’re just necessary to answer the “how’s Alice?” question.
Alice continues to bring a great delight to our lives. She faces this trial, no doubt with limited understanding, but also with great courage. And it’s that courage that I wish to highlight, because I could, and hopefully do, learn much from my little Alice. Here’s something of her courage:
Courage to be Content
By content I simply mean this: She’s fully aware of the fact that her right arm should work. She should be able to walk. She shouldn’t need an eye patch. Three weeks ago she was indistinguishable from just about any other typical 4 year old. And she’s not crazy about these developments. But she doesn’t complain, doesn’t get frustrated, and has only asked “why” maybe twice and been perfectly satisfied with the answer she’s been given – “Honey, you’ve got something making you sick. Jesus will fix it soon.” She has switched to eating and writing left-handed, and you’d never know she’s only been left-handed for two weeks.
Rather than complain, she rejoices in the things she can do. She can stand, if she slides off the couch keeping one hand on the coffee table, and when she does, she immediately looks to me for approval, smiling as big as if she’d just done a somersault. She’s content to let us help her, she’s content to help herself when she can.
The fact that she can’t run, can only work half the controller on the X-Box (meaning a sister or Jojo has to run the other side, which they do!), can’t uncap markers or manipulate her toys like she used to doesn’t seem to bother her much. She’s adjusted, fast and well. Her joy remains undiminished.
Courage to Trust
We had some breezy days this week, and someone sent us a kite. Kylie did the work of getting it flying, then Alice and I took over, laying down on a towel in the yard while she held the string and I again began to talk with her a little bit about her future. Even if she never says anything, I know it bugs her that she can’t walk. So as we watched the kite fly, I said to her, “Alice, someday Jesus is going to fix your legs, and your sleepy arm (she comes up with the greatest names for everything, and “sleepy arm” is one of her best), and your eyes, and it’s going to be great!
She smiled, sighed, and said, happily and resolutely, “Jesus is going to fix my legs.”
Her simple trust is a wonderful thing. She trusts her daddy. She’s always trusted me to fix her broken stuff. Toys, games, swings, whatever, daddy can fix it. That’s my job. But I can’t fix this one, and I told her that. But if daddy says Jesus will fix it, she believes me, and she believes Jesus will fix it. And that’s pretty awesome.
As God is faithful, after we both die I’m going to get to see her again. Because of that, I really do make a conscious effort to only give her hope I can ground in biblical truth. I’ll be wrong about some stuff because I’m only human, but I’m guessing at that reunion she’ll know the difference between me just making stuff up to make her feel better and doing my best to give her real hope. I’d hate for her to be disappointed in her daddy for just spinning fairy tales when I should tell her the truth, because for better or worse, she believes everything I tell her. And someday she’ll give me an earful if I steered her wrong!
Courage to Laugh
Alice is a funny kid. Sometimes on purpose, sometimes not. There’s a lot of reasons not to laugh these days; Alice gives us lots of reasons to laugh. She told Pastor Bob today about seeing the giraffes when we went to Como Park one afternoon last week, telling him, “they stink!”
I came home last night after confirmation rehearsal, and Michele told me that she and Alice were cozying in bed when this little conversation took place:
“Mom, I’m sad. And God is sad.”
“Why are you sad? And why is God sad?”
Shell said at this point she was expecting Alice to be sad because of her legs not working, her sleepy arm, the fact that she “sees two,” or something along those lines.
“Because I don’t have any chips.”
Epilogue: we have chips now.
Earlier this week she grabbed a marker and decided to draw on herself. She actually drew a pretty amazing stick person on her leg, considering she drew left handed and upside down. One thing led to another, and pretty soon she was drawing on everyone’s face.
She scribbled all over Shelly’s face, and Shelly asked, “What am I?”
“You’re a dead cat.”
Then she held up her hand with her thumb and index finger almost touching each other, smiled and said, “But a little bit alive.”
Alice’s cousin Tommy made family news last year when he ate an earthworm. Alice loves both Tommy and digging worms. So she decided to keep a couple as “a snack for Tommy.” Next time he came to visit, she excitedly gave him his snack, and smiled and laughed as he dutifully chewed it up and gagged it down so as not to let her down. Good stuff.
Speaking of worms, she also collected a bucket full of worms (and by “collected,” I mean either Shelly or I working a spade turning over dirt, throwing worms toward Alice while she scoops them up with a big spoon, because there’s no way she’ll touch them!) and insisted that they go to “Mr. Larry,” her fishing buddy. So Larry came by that night, bless his heart, to collect his bucket of worms, and she also sat in his lap for an episode or two of the funny guys. It was great to see them laugh together. Larry has invested much attention in Alice since our arrival at Quamba when she was barely a year old, and she loves him for it.
Courage to Give
While Alice has been the recipient of a lot of generosity, she also is very quick and eager to give. She loves to go shopping and asks us often to take her. When she finally charms my defenses to a pile of ash, her list usually includes one thing for her, and something for her sisters, her brother, her cousins, aunts, uncles, grandparents, or who knows who else. So we wander the aisles, her seated in the floor of the cart, pointing the direction she wants to go, pulling stuff off the shelves, looking it over, putting it back, until she decides what to get for everyone on her mental list. Or if she doesn’t find what she’s looking for, it’s “Dad, we can go to different store.” Oh good, I feared we were out of options! More aisles of pink! Ah well. We eventually find what we’re looking for or something suitably close. Then we either deliver the goodies or whoever gets them comes over and she takes great delight in giving her presents. Pretty cool.
Before I close, I must once again give thanks to all who continue to pray for us. Many days are dark and hard; but every so often we get one that’s happy and even, dare I say, “fun.” And this Sunday was one of them, and we are so grateful. For all who have sent cards, letters, and gifts – bless you all. Each one is incredibly personal and thoughtful and meaningful, to Alice, and Michele and me. To the brothers in Michigan who have made it possible for my parents to be here and immediately available, thank you. To the folks at Lewis Lake who have made it possible for me to just be home and do my part to lead my family through these difficult, often dark moments of life, thank you. To those who leave encouraging comments here in the blog, forgive me for not responding, but know they are read and greatly loved. Thank you.
These are tough, taxing days, days when we often don’t know what to do, but don’t have the energy to do it anyway. We are alternately restless and lethargic, sorrowing yet rejoicing. God is good, he is faithful, he has not abandoned us. But this is hard. I’ve come to the conclusion that it’s supposed to be hard. But we will accept good and bad from God’s hand, because even and especially the bad things are working together for good. Our faith in God’s plans for our good and Alice’s good is renewed day by day. I firmly believe the Bible when it tells us that the joy that awaits us is in exponential proportion to the sorrows we feel now. Hope is a good thing, and we’re so glad to have good hope.
Lastly (part two), if you haven’t heard Pastor Bob’s address to our church and his prayer for Alice last Sunday, please take the time to do so. You can find that address here.
I also had the privilege of preaching from my favorite text these past few months, Romans 8:18-25, and expound on the hope that anchors our soul. You can find that here.