Common Slaves

On the seventh day the child died… David said to his servants, “Is the child dead?” They said, “He is dead.” Then David arose from the earth and washed and anointed himself and changed his clothes. And he went into the house of the Lord and worshiped. He then went to his own house. And when he asked, they set food before him, and he ate. 2 Sam. 12:19b-20

The record of King David losing his infant son was never too far from my mind during Alice’s final weeks. The passionate prayers and sorrows before death, followed by a seemingly immediate return to “normal” life sort of laid out a simple pattern for me that I hoped to follow.

The night Alice died, after I’d lifted her lifeless, already stiffening body off our bed, carried her through the kitchen, out the front door, and set her in the back of that shiny black minivan, laid her on a cot that was far too big for her little body, kissed her cool forehead one last time, pulled up the zipper of that adult size bag – after all, this ride wasn’t designed for kids – I walked back into the house where my Dad was seated at the table, and with reference to David that I knew he’d understand, I said to him, “Time to take a shower and eat something.”

As I write this paragraph, we are now two and a half months along in our journey without Alice. And while our road still has hills and valleys, twists and turns, and we hit various (sometimes unseen) bumps and potholes, it is beginning to slowly smooth and straighten out. Describing life is kind of like painting a still portrait of an action scene, trying to take something in motion and freeze it, and as soon as I write this, we’ll probably feel a little different and I’ll wish I’d waited longer to be able to give a better, fuller, clearer picture.

Drinking the Cup

In the first days and weeks following Alice’s death, the best way to describe how we felt was that we were drinking a cocktail of all kinds of conflicting emotions, and each one seemed to have various moments in the forefront of our minds. In the first days we felt sad, of course, but also a sense of relief, mostly for Alice, because some of her final days were, to be honest, brutal, and we didn’t want her to have to endure any more of them. The rest of death seemed preferable to the torture of cancer, and even the half-rest gotten through morphine and the anti-anxiety drugs we had to give her.

I think perhaps one of the hardest things I’ve ever had to do, and a job I hated so badly I couldn’t let anyone else do it, was to fill those little plastic syringes with drugs every couple of hours and squirt them inside her cheek, essentially putting and keeping her in a drug-induced stupor. I hated it only slightly less than watching her semi-conscious agitation and fear as she struggled and gasped for one gargly breath after another, for hours that seemed like weeks. So there was a relief when that was over. A relief for her, and frankly, even with a sense of guilt for feeling it, relief for us.

We had the luxury (and I hope you’ll understand my use of the term “luxury”) of having, from about day 4 in Alice’s journey, way back in September of last year, relative certainty of the outcome. Wanting to be as realistic as possible about this thing meant that we had to take seriously the 0% survival statistic that accompanies DIPG. I often think if she had 50% odds, or 80% odds, in the end we’d have felt a greater sense of disappointment, a greater guilt for finding it too slowly, pursuing the wrong treatment, or any number of possible regrets when she died. But the seeming certainty of death (tempered, to be sure, with a cautious hope) meant that for 8-1/2 months, we had more or less been preparing for this day, and when it came, we weren’t surprised, and though sad the journey was over, it was nice to finally be out from under the shadow of impending doom, the fear of what that day would be like, and rather than wonder in fear what it would be like, actually face the thing itself.

Back around February when Alice was feeling really good, she spent a night at my brother’s house, having a sleepover with her cousin Claire. She was excited to go, and had a wonderful time. I remember when we sat down as a family for supper that night, as we usually do, and her spot on the bench was empty. It was kind of an eerie feeling, like this is how it’s going to be someday. It doesn’t really matter whose seat is empty at the dinner table, it just doesn’t feel right, and it’s too quiet.

It’s always been amazing to me that whenever a new baby is added to the family, in a matter of days it seems impossible to imagine a time when that little person wasn’t there. We only had 6 children for 9 months, but after Violet was born, it felt like we never had less.

When Alice died, we quickly discovered that subtraction doesn’t work as fast as addition. Having eight stuffed into our seven passenger van felt so right and normal that when everyone had their own seat, it seemed like riding in a cargo plane – big and empty. Something much bigger than a four-year-old seemed to be missing.

If addition quickly feels like someone’s always been there, subtraction, when it does finally and slowly begins to set in, feels sometimes like she was never there in the first place. And that’s a different kind of lousy feeling. Alice left all kinds of tracks in our hearts and around our world. The pictures she drew on the living room window are still there, we filled up a chest of the toys that she loved the most, and her bed is still full of her stuffed animals. I saved her wristbands from her hospital visits and use them as bookmarks.

But her tracks are fading, slowly. Her towel doesn’t hang in the shower anymore, her shoes aren’t scattered around the front door. The sound of Spongebob’s annoying voice or “the funny guys” hitting each other isn’t the near constant background noise of our house any longer. The bag of pretzels she wanted and left half eaten (the bag left open in the drawer long enough that nobody wanted to finish them) has finally been thrown away. “Eggs like a ball” aren’t in high demand around here anymore, they were kind of her thing. Her clothes have all been washed and put away, out of sight and slowly out of mind.

Michele perhaps expressed the feeling best when she wrote this: “I wish I could go back to life before cancer desecrated her little body. I hate all that it did to her! It paralyzed her, it took away her dignity, it reduced her to a mere shadow of the girl we loved and God allowed it, maybe He even planned it, and I have to figure out how I can be okay with that. I am not at all sure how to get there from here… I want to cling to the past because it has my Alice in it – the real Alice and I feel like if I stop hurting, and talking about her life, and missing her it will be like she never existed and I can’t bear that. I feel as though if I could just keep the memories of her laughter and her funny sayings and words and her fancy dresses and all of her Aliceness fresh and bright in my mind then she can’t really be gone from me. They start to fade anyways in spite of all attempts, as time marches on and there is nothing left to do but accept the unacceptable and try to keep moving forward in life. Sadly forward is further away from her and so I very much hesitate to go in that direction. I just want to sit here; a reminiscing stick-in-the-mud willfully caught in a time warp.”

One of the things that Michele and I often did together in those first days and weeks in order to kind of recalibrate our memories was to look through pictures, remembering her smiles and laughs. We have pictures from her last week or so, but we rarely look at them. We don’t mind so much remembering the bad stuff, and we’re not keen about forgetting anything, it’s just that we’d prefer our “default” memories to be happy ones, not sad ones.

Speaking of pictures, something I never really anticipated is the odd joy of seeing a picture of her I’d never seen before. Once in a while, the kids or a friend or relative will show us one from their phone we’ve never seen before, and I love that. It’s like the happiness of watching a deleted scene at the end of your favorite movie… you know how the story goes, how it ends, and that doesn’t change, but seeing a new piece of that story gives a freshness to the familiar. In some sense, new pictures are like having a new day with her.

The Big and the Small

I think it was in Pastor Bob’s office as we were doing some planning for her funeral one day when he said to me, “Alice was larger than life.” For almost nine months, we lived with this little girl who, quite unknown to her (or as far as she did know, she hid it well) brought us into a world filled with big things.

Her tumor was big, the threat it posed to her was big. The response of family, friends, and strangers was massive. Her benefit on that wonderful December evening still amazes me for its size and scope. The gifts of kindness and love that came from across the community, and even the nation were colossal. Alice T-Shirts, Alice Facebook profile pictures, and my Aunt Lori’s red “Pray for Alice” bracelets, one of which is still on my left wrist, were everywhere. Her funeral was huge.

We lived in this world of big things. We traveled to Florida courtesy of Make-A-Wish. We spent time at the Dells. My brothers remodeled half the main level on our house. We were given lots of attention almost everywhere we went; strangers knew our names and people still unknown to us picked up our check at restaurants. We experienced “once in a lifetime” kinds of things quite frequently. We ate like kings courtesy of some dear people who stuffed our freezer with “sticks,” bacon, and anything else Alice loved.

By sheer necessity, we pushed aside so many mundane things that are significant enough in the normal flow of life because we lived primarily preoccupied with the specter of life and death on the front burner of our minds. And all that activity and the unique and special things were good and right, and as a community of friends and Christians so many dear people gave so much for Alice to have the best final months a little girl could have. And she did. You never knew a happier kid, notwithstanding all she endured. And we’re thankful for what you gave her.

But now we’re trying to readjust to the small things. It’s hard to care about changing the oil on the van when your daughter may only have two weeks to live, or return a phone call or email when we have just laid her in the ground. The big thing pushed the little things aside. Now the big things are gone, but the little ones still felt ridiculously insignificant if not downright silly and a waste of time. Problem is, the little things is what we had left; they were normal life. And without the big things, not caring about the little things kind of meant there was nothing left to care about. And that’s an empty, frustrating feeling. Our purpose in life was, for almost a year, to care for Alice. Then she was gone. And the normal responsibilities of life just seemed so, well, meaningless.

That’s changing. Slowly.

Several weeks ago Michele and I went to visit our friend Linda down at Braham Monument to order Alice’s gravestone. That was harder than I anticipated, in part because it felt like the final thing on our “to-do” list for Alice. It’s strange, not being able to do anything else for your child. Our work for her is done. We wish it wasn’t. Maybe that’s what is meant by the phrase “moving on.”

This week Alice’s gravestone showed up. I walked out to the cemetery and stared at that piece of black granite carved with her name, two dates, and Michele’s drawing of Alice walking with the Lion. Across the bottom are the words “The Lord is My Shepherd.” I sat down on the grass in front of it and shed a few tears. It’s almost ironic – a cold, hard block of granite designed to withstand the harsh elements of this world for a century or more, marking the life of my warm, tender spirited little girl who wasn’t able to survive them for five years.

Since some have asked, here’s a few words on grieving, from my perspective anyway. A week or so ago I read C.S. Lewis’ A Grief Observed, wherein he describes the days and weeks following the death of his wife, and I commend it to you as a brief, but incredibly insightful look into the mind of a man in sorrow, communicated in a way only Lewis could.

Until the past several months, I’ve thought of “grieving” as synonymous with “being sad.” But, as any amateur in the grief business probably knows, it’s deeper and more complicated than that. While I’ve felt sad, the reality is I haven’t felt as sad as often or as deeply I expected. It feels good to feel sad, and even to cry. I recently joked to Michele that crying for me is like sneezing for her – I feel it coming, screw up my face, close my eyes, take a deep breath, get the show on the road, but halfway through the mission aborts, and that’s that.

Grieving is adjusting to a life that is permanently diminished (in a “this life” sense…) It’s coming to terms with a new, unpleasant reality. For us, it’s a reality that doesn’t have Alice in it. And having tasted a world in which we loved her and she loved us, it’s hard to enjoy a world where that thing we had has been taken away. Something unique, irreplaceable, and infinitely valuable has been lost, and let’s just say the thing as it is… the old reality was better than the new one; I don’t like this one as much.

That’s probably why, when a person dies, we stand around and talk about how we’ll see that person again – we’ve experienced a better kind of world, where the departed was with us, and we want to return to it. If all the pieces aren’t in the box, it’s just not a very satisfying puzzle anymore. I understand better the shepherd who leaves the ninety-nine to get the one that’s gone missing. Grief is going back to the ninety-nine empty handed, trying to figure out why you’d happily trade them all away just to get the one back.

Of course, Christian grief has something very distinct about it: Christian grief lives in full view of the reality of death and fully recognizes how hard it is to go from a better reality with Alice in it to a worse one where her little body lies beneath the grass. And it lives in view of the reality that for us, we may have to die ourselves before we see her again. Still, hope is not lost. There remains a grave from which the Occupant exited the premises under His own power 1,990 years ago, with the promise that He’d return and empty the graves of all His family, which we are by faith. Our hope is in the risen Jesus. We have none other. All other hopes let us down. Radiation, chemo, even *gasp* natural foods and supplements.The only hope that remains is a hope in One who can reverse even death itself. So we grieve, but with hope.

Smaller Faith

I was working my way through 1 Peter 1 recently where Peter writes about our faith being tested in suffering like gold being purified by fire. The picture is simple enough: heat the gold up, and all the not-gold separates from the is-gold. That makes the gold pure, and therefore better and more valuable, but it also means the original lump of gold-plus is smaller.

I hope you’ll understand what I mean when I say I have a smaller faith. Faith is, in simple terms, what we expect God to do in given circumstances. Thing is, God is who He is, and my expectations don’t make Him what He is. Turns out, He’s more interested in being Himself than meeting my expectations.

From the beginning of this ordeal, as I’ve said repeatedly, I really expected it to end like it did. I hoped it wouldn’t, prayed it wouldn’t, and all that, but I have two eyes and can read medical reports – little kids die from DIPG. God lets it happen. Little kids die from all kinds of things. Today Michele counted at least thirteen other children in the little cemetery where Alice is laid to rest.

So that wasn’t a surprise. But what was a surprise was how difficult those last days were for Alice. When I wrote at the time “in the end, she died peacefully,” there’s a lot hidden by the little words “in the end…” Just before the end my faith was run through a fire, and some of it got burned off.

I kind of thought along these lines: “Here I am, Lord, your servant, and all I have is ultimately yours. Even my children. If you want to take our Alice from us, she is Yours.. I don’t really like it, I’d rather keep her, but you are God and I’m not, take her if you like.” What I expected in return was for God to respect my submission and make the process as easy and painless as possible – especially for Alice. But it wasn’t as easy and painless as possible. Parts of it were torture, for her to endure, and for me to watch. I felt disappointed by God – here I’d done everything to try to honor him and his sovereignty over all things, and in return it seemed fair to expect that he’d make this as soft and tender an exit as possible.

Turns out God and I weren’t partners in this thing. He called all the shots. It’s not even like He would call three shots and then give me one. He got them all. My contract of faith included this clause that read something like, “Before it gets too bad, God is going to show up and make it easy to endure. He’s going to sweep in and blanket our souls with sweetness and hope, and we’ll feel a closeness and comfort we’ve never felt before.” Seemed reasonable enough. I’ve heard other people express their experience that way.

Well that’s not the way it went down. Almost like Jacob, I had to wrestle for two days with a God who would not only take my Alice away, but in the process let her endure some really difficult, and to my way of thinking at the time, entirely unnecessary trauma before he took her. And when I looked for Him in those darkest moments my soul has ever endured, He seemed nowhere to be found. I called out, and didn’t hear His voice. That is not to say, of course, that He wasn’t there. He just wasn’t there in the way I expected Him to be. I give you permission to read that as me being disappointed in God, however, my disappointment is a reflection of my expectations, not some failure on God’s part. He kept all His promises. Every one of them. He just hadn’t made certain promises I thought He had.

As I write these last few paragraphs late on a Saturday night, it’s three months to the hour that I carried Alice out of the house the last time. I’m here to say God is faithful. He is good. He has not let us down. The suffering was more intense than I ever imagined or could have prepared myself for, and believe me, I tried to prepare myself for it. When He put my faith through the fire, it hurt. It’s supposed to hurt, that’s how you know it’s doing something. Part of this new reality I’m adjusting to is a reality in which I have different expectations of God. And I don’t mean that in a bad way. I trust Him, more than ever. And I really want to know Him as He really is. And I do, more truly than ever.

Job said, following the sudden, violent death of his ten children, “though he slay me, yet will I trust him.” That’s a great sentimental line until God doesn’t step in and eradicate brain cancer for your daughter. Then it’s a dogged determination that says, “I have no idea why God would do this, but He doesn’t require my permission or owe me an explanation.” Don’t get me wrong, I’d like an explanation. But He’s God and I’m not. He’s working all things together for eternal good, I’m just begging for life on this side of death to be good, since that’s usually as far ahead as I look.

Whether or not I like how God works in the moment is irrelevant. And somehow, on this side of the darkest hour of my life, that’s strangely comforting. It’s good to have a loving God who maps out our lives, the good, the bad, and the insanely painful, as though death itself is hardly worth considering since for Him, it’s so easily overcome.

Well, like the stone is the period on Alice’s earthly life, this chapter will mark the period of my telling her story. Lewis repeatedly complained in A Grief Observedthat he fell into talking about himself rather than his beloved, and in this post, I feel the same disappointment in myself.

As a family, we’re “starting over.” The immediate days following Alice’s departure and funeral we were still kind of energized by the significance of the event and its attendant activities, so we went about the business of getting back into some semblance of normalcy. After a couple weeks, we ran out of gas physically and emotionally and were ready for a break. So we spent a week on a houseboat up on Namakan Lake, just being together and making some memories, our first pleasant memories in the post-Alice era. Hard, but necessary, and ultimately really good.

My heart, slowly returning to life, remains full of gratitude for all the kindnesses we have received and continue to receive, and I am often amazed and incredibly happy at the impact of Alice’s story in the hearts and lives of you who have let her in, even though it meant you would be crushed along with us. Join us in eternal hope. As Michele and I say to each other during the dark moments, “It’s going to be okay.”

Whenever I finish one of these, I always end up wishing I’d said this or that, or thanked this person or that. This being the last one, and for whatever reason the most difficult to write (not necessarily emotionally difficult, but somehow just thinking coherent thoughts and stringing them together is still obnoxiously hard to do), that feeling is particularly strong right now. But I’ve already made this far too long, and included far too little. Still, I wish to extend our deepest gratitude to all of you who have faithfully walked this journey with us, sometimes at great expense, and still do.

-jr