In Heaven

Susan went to Heaven this morning. I was lying on the couch not sleeping when Daisy barked softly a couple of times. Alerted, I stepped over to Susan right away. She had stopped breathing. It was 4:23am. I listened as her heart quietly stopped beating a few minutes later.

Pastor Ken shared this word with us yesterday from Psalm 73:

“Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory. Whom have I in heaven but you? And earth has nothing I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever.

Those who are far from you will perish; you destroy all who are unfaithful to you. But as for me, it is good to be near God. I have made the Sovereign Lord my refuge; I will tell of all your deeds.”

Our sister-in-law Nancy shared this word with us today, John 10:28, “I give them eternal life, and they shall never perish; no one will snatch them out of my hand.”

I also think of John 14:19, “Because I live, you also will live.” The Word, the Word of the Lord, the Word of Life. Such a comfort. Such grace when we need it. Our God is everything to us.

Passing over

Last night, Susan began passing over from her familiar, temporary home to the home in Heaven the Lord has prepared for her. She is actively passing away now in that final course that can last hours or days. Her body so clearly is failing; yet she’s still so lovely. 

Our family and friends have been gathering with us to visit, grieve and say goodbye, or at least to get used to the idea. It’s hard. We’re sad and we have peace. Susan has peace. We feel so loved and supported and thankful. We treasure God’s presence, welcome his timing, and pray for her comfort and ours.

Hospice, week 14

At 14 weeks on hospice care, Susan’s status seems strangely stable. She continues her trend of less eating and drinking with more sleeping and unresponsiveness. This week she wasn’t interested in food from Tuesday through Thursday, but finally ate a bit of applesauce yesterday morning.

When I spoke with her hospice nurse during yesterday’s visit, he said the human body is an amazing resource. Looking up to God, he said we’ve been given all we need to survive with the smallest amount of nourishment. He told me in spite of all that’s going against her, she has no infection, no skin breakdown, the meds and nutrition she needs – she’s doing perfectly.

We’re left to continue our surreal existence with Susan sort of living and sort of dying, attended by the peace of God. We’re in a place we don’t want and don’t want to be rid of; dealing with a situation we didn’t start and can’t stop and can’t speed up or slow down. We can’t control such circumstances, so we accept them. Knowing the Living God as we do, we have comfort in yielding to him.

The holiness of it is that a precious human life waits in the center of our situation – Susan, my wife, our kids’ Mom, others’ loved one. She’s precious to us and greatly precious to God. We’re all focused on her and attending to her needs and her comfort. The holiness of it means God is present with us during these days for his will, his good plans for us, and his glory in it. We recognize that and accept it, and we don’t need to know why it’s happening or what will happen next. It’s all so weird and hard and okay.

We thank God for his presence and for the support of a community who prays, visits, brings meals, and shows love in lots of ways.

Six on the 4th

Things have changed by degree for Susan over the past week – persistent sleeping, hazy alertness, less food and water, few words. She’s unable to move her left arm now, like the rest of her limbs. Water comes by way of a two-ounce syringe since she’s not able to use a straw anymore. During a brief waking moment the other day, I told her I can see how she’s doing physically and asked, “But how’s your spirit? Do you still have peace?” “Yeah.” I knew she did, but hoped she could say it. It just feels good that we can still communicate.

Six years ago yesterday, I watched as Susan’s condition worsened at home. We were biding time until her scheduled brain surgery after her tumor biopsy the prior week. But her headache grew more intense that day and brought lethargy and vomiting. I helped her into the SUV and rushed to Long Beach Memorial, watching her fade as we drove. I parked near the ER entrance and began helping her out of the passenger seat when she passed out and slumped over. Was she dying? I remember saying “Susan, stay with me” sharply and hollered for someone to grab a wheelchair.

They admitted her in a blur; then came all the hook-ups, a CT scan, a visit from Pastor Ken, and some groggy, painful hours for her in ER that led to getting a bed in the neuro unit upstairs. I went home to rest but got a midnight call that she was in ICU on a ventilator following a seizure. I met Susan’s brother Randy there. We watched as she writhed and pulled at her restraints to yank the tube from her throat. I remember how that didn’t seem like Susan to me.

Those July 3^rd events brought her to emergency brain surgery the evening of July 4^th. Her family rushed home from Clearlake or booked flights from Colorado while friends left their patriotic parties to join the hospital vigil. We had lots of prayers and tears, and then great relief when she came out of surgery with a good report. What followed were the waves of treatment, healing, recurrence and complications of brain tumor world that have dominated our lives for the past six years. Now Susan is home on hospice care.

I think we’re as prepared as a family can be for days like these. I’ve been blessed by our children’s bravery and how their recent comments reveal acceptance. Lexie said she’s glad we’ve had this time to be with Mom while she’s on hospice, that it’s better this way than if she’d passed away more quickly. Austin said he’ll be relieved when Mom is in Heaven, healed in the presence of God instead of lingering here in her weakness. Adam said he assured Mom that she doesn’t need to stay here for our sake, that we’ll be okay, that she’s not letting us down when it’s her time to go. I’m so thankful that God has given us all such strength.

I’m encouraging them to tell their Mom what’s on their hearts. She can’t respond much, but she hears us. I asked them to imagine her not being here – if they think there’s something they wish they would have said to her, they should say it now. 

The Psalms continue to resonate as I read and pray with Susan in mind.

“But may all who seek you rejoice and be glad in you; may those who love your salvation always say, “Let God be exalted! Yet I am poor and needy; come quickly to me, O God. You are my help and my deliver; O Lord, do not delay.” Psalm 70:4-5

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.

Hospice, week 7

Susan’s progression of more sleeping and less waking continues since last week. The past few days she’s had fewer meals, either from sleeping through mealtimes or losing interest in the meal she’s having. Her hospice nurse encouraged me not to worry, that she really doesn’t need more than one meal a day. It’s hard to know how much time she has at this point; but I know one can linger only so long without food and even less without water. I know that as Susan’s journey takes her toward Heaven, food and water will become less important to her.

That said, today she had several awake periods and ate three meals. She had a good day. She smiles easily when she wakes up and still never complains. Our messing around is muted; but she still giggles when I tease her. That’s because when we mess around, we don’t mess around.

I asked Susan the other day if she’s ready to go to Heaven. She said “yes.” Curious, I asked if she thinks she’ll go to Heaven soon. Just like you and me, she couldn’t answer. I asked if she’s scared. She said “no.” I love her courage and trust in God.

I’ve been praying Psalm 63 for Susan this week. David wrote these words in the Desert of Judah:

¹ O God, you are my God, earnestly I seek you; my soul thirsts for you, my body longs for you, in a dry and weary land where there is no water.

Susan’s soul thirsts for God and her body longs for relief in a weary land, our restless world.

² I have seen you in the sanctuary and beheld your power and your glory. ³ Because your love is better than life, my lips will glorify you. ⁴ I will praise you as long as I live, and in your name I will lift up my hands. ⁵ I will be fully satisfied as with the richest of foods; with singing lips my mouth will praise you.

She knows the God she worships. She knows his goodness. His love is her greatest treasure, and is one of the spiritual possessions she will take with her from this earth. The lesser things will stay here; but she’ll bring her great treasures back to the Lord with thanksgiving so they can celebrate together.

⁶ On my bed I remember you; I think of you through the watches of the night. ⁷ Because you are my help, I sing in the shadow of your wings. ⁸ My soul clings to you; your right hand upholds me.

Susan’s journey is so much more private now. Sometimes I find her awake at night, lying there quietly. She has thoughts that only the Lord knows. God truly is our help; we have no other. He gives us great peace, so much that we praise him under his unseen protection.

⁹ Those who want to kill me will be destroyed; they will go down to the depths of the earth. ¹⁰ They will be given over to the sword and become food for jackals. ¹¹ But the king will rejoice in God; all who swear by God will glory in him, while the mouths of liars will be silenced.

Cancer is a great disabler that is itself disabled. The lie of cancer is that it will consume you; but now I realize how limited it is. It cannot touch your soul. It cannot snuff your spirit. Cancer may so disease a person’s body that it cannot go on living – but cancer dies when the body does. Cancer loses. When Susan goes to heaven, she will glory in the Lord, forever.

Sometimes not here

The noticeable change for Susan over the past week is a slight decline to the point that she’s sometimes not here. She sleeps most of the time, often deeply, and is often weakly alert when she’s awake. When she is alert just after waking up, she doesn't have a lot of stamina. She's otherwise comfortable and sweet-spirited. Word-finding is really hard, so she doesn't talk much. I noticed the word “paraplegic” in her nurse’s notes, so I guess that’s true since she hasn’t walked in about three months. Medical terms can be jarring in their accuracy.

It’s weird that she’s sometimes not here. She slept through me repositioning her in bed recently. She slept during Adam’s birthday party with 15 guests. On Sunday, after sleeping all night, she slept through late morning. She slept through much of yesterday’s bed-bath with her nurse’s assistant.

Going on hospice is acknowledges that if someone’s about to commence the process of dying, you’re going to support it and not interfere. That’s a hard decision to make. That process on hospice means you’re sometimes not here; then I suppose it means you’re sometimes here but mostly not, and then finally you’re not here at all. I've noticed that Susan’s journey is becoming more private, something she has to do alone. That’s hard too, even though there's no other way. Gradually or all at once, being separated from someone you love is just really hard.

The Fairfield Four sing, “You got to walk that lonesome valley, you got to go by yourself… ain’t nobody else gonna go there for you.” That’s another jarring truth even without the medical terms

The other day I thanked the Lord for being my shepherd, so there’s nothing I will want. I thanked him for making me lie down in green pastures, because I needed that rest. I thanked him for leading me beside quiet waters and enjoyed the sounds I heard. He refreshes my soul. I thanked him for guiding me down the right path for my good and his glory.

I thanked him again that his presence, his perfect love, casts out all fear from the valley of the shadow of death. I thanked him that while it’s a lonesome valley, he’s there with his strong hand to lift and guide and comfort. I thanked him again that the reason it’s the valley of the shadow of death and not the valley of utter darkness is his light. His light gives vision and means the gloom is only temporary. 

"Because you are my help, I sing in the shadow of your wings. My soul clings to you; your right hand upholds me.” Psalm 63:7-8

Strange joy

We enjoyed a nice Mother’s Day yesterday that started with breakfast in bed for Susan. Okay, so she has every meal in bed. Work with me here. She chose the bacon and cheese omelet over the oatmeal and relished a second course of vanilla frozen yogurt topped with fresh raspberries and blueberries, drizzled with boysenberry syrup. Later, instead of our traditional lunch at Randy & Dorothy’s, everyone came over for mid-afternoon dessert so Susan would be included. It was good family time.

I recall Mother’s Days past, when the kids and I would work furiously and secretly in the kitchen to prepare a partially elegant meal while Mom got ready for church. If there were fresh berries and something sprinkled with powdered sugar, it was partially elegant. We’d try to catch her after her hair was done but before she got fully dressed so we could coax her back to bed for the surprise delivery. I remember the kids gushing with excitement for the special presentation of breakfast and cards and flowers, and how their anticipation met with delight that she was enjoying what we’d prepared.

This year was different, like so many things for our family. Susan remains stable, neither improving nor declining. She knocked back a urinary tract infection this week with antibiotics and knocked back several more severe headaches with morphine. Like always, she’s in good spirits and is generally most alert just after waking from restful sleep.

Now in week 5 under hospice care, things have progressed differently than I thought when I didn’t know what to expect. I guess I still don’t know what to expect; but we’ve all gotten used to Susan’s bed in the den and the quiet routine of attending to her. Life on hospice in week 5 is strangely normal, strangely joyful, and strangely open-ended.

“Strange joy” borrows a title from Bob Bennett’s latest album, Joy Deep as Sorrow, a recording I recommend highly. The song speaks of peace in the middle of trial and “strange joy, barely understood, that from the night of trouble dawns the day of good.” We’re in the firm center of that mystery, with Susan not really dying but not really living and with us not really grieving but not really celebrating. We’re waiting for weighty things to transpire that are orchestrated by loving and unseen hands according to a divine timetable, while God’s people attend to us in prayer and with acts of kindness. We’re waiting.

But the joy is real and the peace is real. They mock our circumstances, a situation that should bring sorrow and chaos. This strange joy from God makes it possible for us to be okay, really. It’s nothing new for him to dispense – we’re just among the latest of countless people who have latched on to the power and mystery of the Cross. He supplies our purpose for living, comfort when dying, and resurrection hope beyond the grave. I love Jesus’ words, some of his last, in John 14:19: “Because I live, you also will live.” The gospel is so simple. Today we’re okay, really. In faith, tomorrow we will be too.

Resting

Susan is resting. She woke up early, feeling well, had breakfast and got a clean gown and sheets. She asked for her glasses using words she couldn’t come up with two weeks ago. Now she’s resting. Yesterday she had a severe headache, took some pain meds and then rested. She rests a lot.

I’ve camped on Psalm 62 this week, which begins, “My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken.”

I love that Susan has found her soul’s rest in the Lord. I believe it’s the singular reason she’s prevailed in peace and strength for nearly six years under the decay of brain cancer. It’s why the ICU nurse asked her if she ever complains. She just doesn’t. She voices pain when she hurts too much; but her resting soul prevents her from raging or railing against it. There’s a difference.

Our souls long for rest. We spend our lives trying to find it. As Americans, we’re particularly good at the pursuit and are invited to partake from the nearest TV, computer, billboard or radio: nicer clothes, sleeker cars, fuller lashes, harder-hitting entertainment, smoother beer and better investments. We buy it up because we can’t get no satisfaction. Really, we’re desperate for rest.

Susan’s pursuit for satisfaction disappeared overnight nearly six years ago. While fighting for her life, having a new summer purse no longer mattered. Neither did a new hairstyle, nor the HDTV. You may not have said we were overly materialistic; but it seems many of the things we valued proved unreliable for life’s foundation. Quickly failing when tested, our false supports gave way to our true foundation in God.

There’s a reason David says, “He alone is my rock and my salvation.” Rock is massive and immovable. It lasts, especially when compared to things of earth that come and go, things that rot or break, things we think are important. God is our mighty rock.

Salvation is the ultimate. What, or who, can save us? Who besides the Lord? Who else said he made us? Who else said he can save us? Who else has made good on every promise in spite of our attempts to explain him away? Who else, brokenhearted about our rebellion from him, offers us salvation and not annihilation? Who else offers provision and purpose on earth in exchange for our devotion – and the hope of heaven besides?

In light of all else that claims to offer what our souls need, God is a worthy refuge. “He alone is my rock and my salvation; he is my fortress, I will never be shaken.” He’s where Susan found her soul’s rest a long time ago. Heaven, whenever she goes there, will be just another form of it.

Hospice, week 3

We’re thankful Susan continues to hold fast in her third week on hospice care. She’s taking plenty of liquids and food and has none of the hazards that often come when bedridden for weeks, like skin breakdown or breathing trouble. She’s been a bit congested at times, but has responded well to her breathing treatments. She still has periods of severe headache and takes morphine only when she can’t stand it.

Her cognitive status remains mostly unchanged also; verbally responsive but not talkative and sleeping a lot of the time. She doesn’t complain, but remains sweet and pleasant. I haven’t observed any seizure activity or progressive decline one might associate with tumor growth.

In spite of her diminished state, Susan is much like she has been since her brain cancer diagnosis: here, at peace, and trusting in the Lord for his will and his timing. It’s such a strange existence for all of us, but one that’s become familiar, even normal. Our sons play Xbox games while Mom lies in bed a few feet away.

We know little else except that God loves us and has us in his hands, and that friends stand with us in love, prayer, and beautiful expressions of support. My constant prayer is, “Lord, have mercy on us.”

Mostly stable

In her second week at home under hospice care, Susan is mostly stable. Depending on when you might visit, you may come away impressed that either she’s doing well or doing poorly. She’s not well oriented to time or place and still has lots of trouble finding words, but she continues to display remarkable grace and strength. Her hospice nurse, after noting her increased weakness since last week, commented how well she’s coping.

A few days ago, I asked her if she thinks she’s getting weaker or stronger. She said, “stronger.” If nothing else, her strength of will to overcome is phenomenal. This morning I asked her if she has peace (yes), if she’s happy (yes), if she has joy (yes), and if she’s worried (no). Since then, she’s slept most of the day after the return of severe headache and having pain meds. So it goes.

I arranged to return to the office three days a week and to work remotely from home the other two, though I’m clearing the way to take leave as needed. It’s been hard to balance work and home life such as it is; but I’m working it out.

We continue to be greatly encouraged and loved by our family and friends. People express their care in so many meaningful ways, with delicious meals, heartfelt cards, lovely flowers, and warm visits. I know so much of our peace comes from so many prayers. I find the Lord to be a particularly worthy refuge, as he has assured us he’ll be. All of God’s promises that he’s with us, that he saves and heals us, that he protects us; that  our lives are wrapped up in his have taken on new significance now. Our journey has been really hard and recently became harder; but we thank God for bearing us through it.

Okay at home

Susan has been home from ICU nearly a week and is doing okay. She’s had phases this week ranging from bright and energetic to sleepy and less responsive, with periods of severe headache. Although she’s had a slight decline the past couple of days, her overall improvement from seizure activity last week has been a relief.

The level of activity at home is most unusual for us with nurses, caregiver, social worker and chaplain from hospice along with lots of family and friends, including a couple of brothers who trekked separately from Colorado. So many enjoyable visits along with being Susan’s nurse and trying to meet project deadlines each day for work have been a challenge for me. It’s meant late nights working, hard-won rest when I hit the pillow, and a blur of a week.

It’s all a big adjustment for us, compounded by the uncertainty of Susan’s condition, but over it all rests a great and wonderful peace. Our home has become a sanctuary for our family, a place of visits, meals, laughing, prayer, and joy, where those who visit bring us blessing along with their good will, meals, and flowers. We have the knowledge of God’s presence with us that sometimes we feel, and always know. I’m conscious of the gift of time we’re enjoying, and thankful to God for keeping us.

Home from ICU

It’s been good for Susan and for us to have her home. She arrived Saturday evening following deliveries of medical equipment and medications, and has settled in to her bed in our den where we all spend most of our time. After sleeping or being minimally responsive all week with seizure activity, she barely awoke during the entire ambulance ride, transfer to her bed, and nurse’s exam.

At first I wondered how a guy should treat his wife on hospice and was unsure what to do. Like suddenly I’m a rookie. But when she woke up later, since it’s all about her comfort, I realized it’s simple – see what she wants. We started with sips of water. She drank a few ounces for the first time since having her feeding tube removed, swallowing easily and coughing only a little. Later she was a little more alert, so I asked her if she was hungry. She was, so I offered her an Ensure shake. She drank about half and went back to sleep.

Sunday we continued with water. Then she drank the rest of the Ensure plus another bottle, followed by some applesauce. A trend was on. I’ve expanded her soft diet today with hot cereal, fruit cups, scrambled eggs, banana, and tonight, mac & cheese plus green salad.

Susan’s strength and energy for life are amazing. With no seizure activity, she’s been sleeping less and more responsive while awake. She’s gone from no responses to yes/no responses to sentences. I’m sure she's been spurred on by stimulating visits with groups of family and friends. Our home is nice for her, with fewer disruptions and the usual household clatter. This morning she was well-rested, lucid and just the right amount of sassy.

Her UCLA neuro-oncologist and social worker were thrilled to hear the news today; and her hospice RN case manager was impressed with what he saw. Of course, we know things can change quickly, but we truly celebrate that Susan has perked up so well.

We know that people are praying for us, so thank you. We feel and appreciate such support. We pray that God will be exalted and that he would give us all transforming experiences as we trust him.

A transition

After a tough week for Susan dealing with more serious complications and me realizing her disease continues to progress, we recognize the time has come to suspend the intensity of hospital treatment and bring Susan home for palliative care under hospice.

I’ve talked with our kids and family, and I met this afternoon with Susan’s neuro-oncologist and our specialist social worker. We had her brought back to UCLA this week so we might know whether she may recover to the point she was even two weeks ago when she was last discharged from here. Her level of seizure activity now seems to show she’s reached a limit she’s unlikely to overcome.

Our goal now is to make her as comfortable as possible, have her home with family, and neither hasten nor delay the process. There’s always the prospect that a person on hospice care can rally back and resume treatment, so we’ll watch for whether Susan does that. At this point in her journey, she’ll show us what she’s ready to do; and we’ll cooperate.

The idea of making such a transition has been hard for me since we’ve been together so long and fighting together so long for her recovery. It’s been a sad week. Crying comes easily and sometimes unexpectedly. The thought of being without Susan breaks my heart; but the thought of her being in heaven with the Lord revives my spirit. I pray for God’s continued wisdom for us this week, for his continued peace to attend Susan, and for him to be exalted in all things.

Meanwhile, we give thanks to God that our son Austin and another driver were only slightly injured in a head-on collision last night that totaled both cars. He was on his way home from church so we could talk as a family about Mom going on hospice. We’re grateful for well-made cars and what I imagine were mighty angel arms keeping each of them protected in their seats. When this swarm of stuff is over, that will be okay too.

Lexie, Austin and Adam are some of the finest people I know. As they go through one of the hardest things a person can face, they’re displaying strength, courage and maturity. Still, it’s one of the hardest things a person can face. We all appreciate your prayers.