11 weeks and 6 years

This week makes 11 that Susan’s been home on hospice and six years since we found out about her brain tumor. It’s an odd conflict of trends since one suggests demise and the other survival. I suppose “conflict” rightly describes a lot of things for us.

The kids and I are conflicted in that we don’t want to lose Mom, but we don’t want her to linger in her diminished state. Susan seems conflicted since she’s at peace with things overall but clearly struggling with being bedridden for so long, unable to speak much and able to move only her left arm due to painful muscle loss. Six years have widened the divide between our former life and our brain tumor one. We’ve adjusted as much as we can to the new normal, but we’re all naturally conflicted about having lost the vibrancy of those days even though we know God is sustaining us in all of it.

I’m conflicted too, in all the ways I’ve mentioned, having borne them all to some extent just to identify them. What may have changed for me over the past week or so is a greater impatience for our circumstances. I don’t like seeing Susan in pain, lingering like she is. Lately she’s awake and cheerful once for every five or six times she’s awake in discomfort. Things have shifted. That’s hard.

What hasn’t changed is the goodness of the Lord, the surety of our heavenly home, the good plans he yet has for us, and our gratitude for all God has done for us. He’s secured our lives eternally and has kept us in his care. Our friend Letty Wunderley brought a delicious meal tonight and reminded me that God orders our steps. That means he knows the end from the beginning, from our birth to our death, and he has our lives wrapped up in his grace. There’s a great peace in knowing that. It prevents us from trying to control things we can’t and to just accept. And trust.

We’re not the first ones to cry out. David says in Psalm 13:1, “How long, Lord? Will you forget me forever? How long will you hide your face from me?” That’s a good question. It’s honest. I like how it doesn’t bother God when we ask it of him. He knows our hearts.

So after 11 weeks and six years, we’re conflicted, but thankful. We’re torn, but peaceful. We don’t understand so many things, but we know and trust the one who does. We trust his plans and his timing. We trust the Lord. Whatever may have changed for me over the past week, our God never changes. Our help is in his name, the one who made heaven and earth. He’s just as worthy of our thanks and praise today as he was on June 25, 2007. 

June 26 will be six years of Susan’s brain tumor journey. That’s 2,190 days. Tomorrow is just one more, so we’ll keep taking them one at a time.

Desperate to see Jesus

Now in her 10^th week of hospice care, Susan’s trend continues with noticeable decline over the weeks yet little change from day to day. She usually manages to have one daily meal while we do our best to keep her hydrated. Her verbal interactions are small and infrequent. She still smiles easily when she’s awake and lucid; but sadly, those days are fewer. She’s been less responsive since the weekend.

We recently received an amazing gift. Our friend Joyce Wybenga delivered a DVD from a church service around 2002 when Susan shared her experience from Joyce’s Companions group that focused on listening to God. It’s amazing on several levels.

The video recalls a time of young kids, busy schedules and certainly no inkling of Susan’s brain tumor. It’s deeply moving to see and hear her again in the prime of life. She appears animated in a way otherwise entrusted to memory and displays the energy, humor and emotion that are so familiar to knowing her. It’s a precious gift and a great comfort to see that Susan again.

But what she says is more remarkable. Susan relates an instance with the story of Zacchaeus, who wanted to see Jesus but could not because of the crowd. She shares how meditating on the Word in Luke 19 ushered in a new experience with God for her. She confesses that she either had been too distracted by the crowd in her life to see Jesus or too reliant on her own efforts, but that she yielded to God that night in Companions. She shares how it changed her.

I remember that event and the season which followed, and how God took hold of Susan’s heart and secured it in his own. It was a time when she moved from a position of striving to one of receiving. She caught God’s love for her in a series of powerful, cleansing experiences, like waves washing over her. As she yielded to him, she let go of stuff inside and received healing. No longer content with doing, she found fulfillment in being with God and surrendering to his will, which transformed her. Susan saw God and his love for her in a new and truer way, which changed how she saw herself.

I remember how it changed her worship. I’d see her in church next to the kids from my perch with the worship team, her arms splayed out like if they could go further, they would. Sometimes I wouldn’t see her at all because she’d be on her knees. I loved seeing her surrender in worship and how it inspired me.

I remember times past when I’d be serving in music ministry or church leadership and growing spiritually, maybe more or differently than Susan was at the time. She’d feel left out and a bit frustrated. During this season though, she was growing, almost slingshotting forward. It was exciting for both of us.

For a long time, Susan had wanted to see Jesus just like Zacchaeus, but couldn’t because of the crowd. God used that passage to call her out, to lead her away from the crowd so he could speak tenderly to her and bless her. That’s what she shares in the video, so we see a transformed woman speak with eloquence and emotion about how God’s love changed her and how she surrenders to him every day.

I’d have been happy for five minutes of Susan reading a grocery list on video in 2002, so this is an over-the-top gift. It’s her, complete and fulfilled, sharing from her heart about real and meaningful truths in her life. I wasn’t able to produce a clip of it for this post, but you get the idea. Sometime later I hope you can see the visual evidence of someone completely captivated by God’s love.

It may seem awkward if not impossible to connect that vibrant Susan to the one in her hospice bed. I know I can’t neatly tie a cause and effect together here or explain God’s purposes in it. Neither can you. We can explain the person and ways of the King of Heaven to a point; but beyond that point, we can’t. God is so much mystery, and that’s good. Perhaps we’re learning to live with it and simply to trust that the One who loves us so well will work it all out.

Hospice, week 8

Today begins Susan’s eighth week at home on hospice care. On days when she’s more awake and alert, I get the feeling she’ll be with us indefinitely. On days when she mostly sleeps and doesn’t eat, drink or respond much, it seems she has less time, days maybe. It’s hard to know because we can’t. We’re left to trust the Lord with life and death just as much as we did when Susan’s brain tumor journey started six years ago.

These days there are usually about 2 hours in 24 for us to interact. She’s most lovely at first when she fully awakes, with her eyes clear, bright, and blue. Her warm smile beautifully frames her thinning face. She responds to my jokes with a knowing look and a brief giggle. We still connect. In those moments I move in with affirming words, food, water, and meds. I ply all of her daily meds on her at once since a second opening is so elusive.

I enjoy praying with her before her meal. We thank God for the gift of life, for his love and faithfulness, for his peace, joy, healing and strength; for our kids. We declare our trust in him and our thanks for holding our lives in his hands. When we finish praying, Susan usually sighs and looks me in the eyes instead of saying “amen.” Sometimes she says simply, “yes.” It’s all amen anyway. Yes, God, you are good. Yes, we trust you. Yes, we thank you.

It’s amazing how God’s Word becomes so consistently relevant through the filter of each day’s circumstances. This week I saw Psalm 65 like never before. David says:

“Praise awaits you, our God, in Zion; to you our vows will be fulfilled. You who answer prayer, to you all people will come. When we were overwhelmed by sins, you forgave our transgressions. Blessed are those you choose and bring near to live in your courts! We are filled with the good things of your house, of your holy temple.”

Eventually, all people will come to God. Susan will come in her time with his Son’s credentials. Her praise waits for that moment when she comes to him, when her vows are fulfilled – like her vow to trust him for salvation. She’ll praise him in person for the day he relieved her of her sins and forgave her transgressions. She’ll praise him for so much more; her praise will go on and on. She’ll join those he chose to bring near and live in his courts. She’ll be filled with the good things of his house.

“You answer us with awesome and righteous deeds, God our Savior, the hope of all the ends of the earth and of the farthest seas, who formed the mountains by your power, having armed yourself with strength, who stilled the roaring of the seas, the roaring of their waves, and the turmoil of the nations. The whole earth is filled with awe at your wonders; where morning dawns, where evening fades, you call forth songs of joy.”

Meanwhile, here on earth where morning dawns and evening fades, the One who answers prayer responds with awesome and righteous deeds. We know the effect of his creative deeds that brought our world into being. We’re among those across the globe who witness his dominion and care over us.

“You care for the land and water it; you enrich it abundantly. The streams of God are filled with water to provide the people with grain, for so you have ordained it. You drench its furrows and level its ridges; you soften it with showers and bless its crops. You crown the year with your bounty, and your carts overflow with abundance. The grasslands of the wilderness overflow; the hills are clothed with gladness. The meadows are covered with flocks and the valleys are mantled with grain; they shout for joy and sing.”

During our years on the earth, we all enjoy the abundance of the world God made and sustains for us. For a time we have the opportunity to praise him for his goodness that covers the earth. And if we choose, we can lay claim to the greater glory that is the heavenly Zion. If we choose, we can praise him now, in our plenty or our wanting. But we look forward to the greater praise that rightly waits for him when we enter his house at last.