It’s closing in on 5 months since Mom’s surgery and my role as active caregiver. It’s 6 months of a heavy new load. It’s 3 months of me living apart from my family and seeing my kids and husband only occasionally. There have been different parts to this journey so far, and I have no idea what’s to come, but it helps to write through the process. Perhaps, one day, looking back, I will see a pattern. I will see God at work. I will see growth. I will see movement. Or maybe I won’t see anything. Regardless of what I see or understand, it’s one of those days where I need to write what I’m experiencing.

Mom is at a low point. She is feeling the full effects of chemo and radiation, though both are officially done. So she’s in recovery, but other than not going to treatment, it feels very similar. The low point includes continued nausea, incredibly low energy, secretions and suctioning (last night it was about 5 times. I’m still in my jammies at 3:16pm), needing supervision walking to the bathroom, help getting up, help showering, help dressing. She’s on 2 LPM of continuous oxygen. It’s a struggle to get her feet up with her difficulty breathing and her nausea, so we’re constantly fighting lower leg edema. Her back, upper and lower, are in continual pain due to sitting in a chair day and night. I often put on essential oils to help, use a heating pad, and massage her multiple times a day. Her interactions are very minimal and brief. She doesn’t have much energy beyond existing. I wash dishes/syringes at least twice a day. I put on her radiation creams 3x/day. Feeding and meds happen all through her PEG tube, so I am shooting something in her every 2-4 hours throughout a 24hr period. I am not able to leave her alone, save for quick trips to the mailbox or to pick up something a gracious friend dropped off. Lately I have been able to step outside for walks, as long as I stay within 2-5 minutes of the apartment. I call our kids a few times a week, and my husband about the same amount of time. Often we get cut off because Mom needs something. I re-order oxygen, trach supplies, and food, trying to keep a good inventory of each. Laundry is a relaxing chore, as there’s not much with the two of us. Lots of rags to sop up spills from feeding or to absorb secretions. I order dinner through DoorDash, and rate the dashers who are able to actually get it to the apartment door without calling me with 5 stars. Her suction device needs cleaning once/day, along with changing her trach collar, cannula, gauze, etc. Three times a week we are going to the hospital for 2 hour hydration appointments, and follow-ups with her medical oncologist. This outing takes a lot of coordination. I need to pack up a bag with syringes, cups, water, rags, gloves, medi-mat, meds, sometimes food depending on the timing, so I can give her her meds/food while she’s hooked up to hydration. Then I need to pack up her suction machine and supplies, get a new oxygen tank hooked up, switch her to portable oxygen, get her in the wheelchair, lock up the apartment, and head over. Even though it’s a lot of work, I love seeing the nurses and staff at oncology. They are the highlight of the visits every time. On top of this load there is the load of being Mom’s voice. Lots of legal forms, Social Security, insurance, scheduling, phone calls, faxes, working to advocate as best I can.

It’s the heaviest load I have ever felt. I am carrying Mom while she can’t carry herself. I know I can’t keep this up long-term. Physically alone, it’s draining. I barely get time to think about how I’m doing emotionally. Once last week I went for a walk, and started crying as soon as I got outside. It took the rest of my walk to figure out why I was crying and to work through those feelings. Thankfully, I did. Wasn’t what I was expecting, but it was probably what I needed.

Friends pick up prescriptions for me, groceries, library books, whatever I need that I can’t go out and do myself. Amazon has become such a help with getting supplies to us. I wish I could tell everyone what their help means to me. There’s a whole host of people helping my husband and kids while he’s single-parenting, trying to work and be the steady adult for them while I’m gone. Oh, it was heart-rending to hear my four-year-old on the phone ask when Mommy is coming home, and hearing him try to work out how much longer he has to wait. My heart aches to see my babies and hold them again. I think the first year after I return home will be lots of cuddling.

We’re told this down season will last 2-4 more weeks, and then Mom may suddenly perk up with lots more energy. It’s not a linear improvement; it’s often a quick and sudden change. I have respite coming this Sunday, then another possible one in later May. It’s also possible Mom could move in with our family in June, once we don’t have to be at the hospital so often. I’m honestly not sure if that will be the best way to go, as I don’t know what her therapy schedule and recovery schedule will look like. Perhaps she’ll be with us for awhile until she builds up her strength; perhaps we will hire a caregiver for that recovery time so she could stay here. It’s too far away to tell, and I won’t waste unnecessary energy thinking about something I can’t deal with yet. There’s enough trouble for one day right in front of me.

I wish I had the energy to call my friends more. Whenever I get a spare moment, I usually use it for things like a shower, lying down, eating, exercise, or calling my hubby and kiddos. I wish I had more time but I don’t. I hate feeling like I’m being a bad friend, and yet I know this is where I am and I can only be where I am. Thankfully I’m seeing my good friends shine out like gold. They get it, they’re not asking anything of me, and they’re here for me no matter what I have capacity for. One of the things I have been realizing is that hard times really reveal who your friends are. Who show up for you, check in on you, extend so much grace and love, don’t give up on you. You end up becoming closer through the difficulty. I am thankful for Erica, for Jena, and for Gail. It may not seem like much, but you three in particular have encouraged me to no end, just by being there. I am also thankful for the army holding us up in all the various ways you do. I saw from my caregiver support group today that what I’m going through, even in the cancer caregiver realm, is an incredibly heavy load. Hence the need for all the support from others.

I’m guessing in a month, our “normal” will look a bit different. I hope so. Hope is something that keeps me going when I don’t want to wash one more syringe, or when I’m sick and tired of the repetitive tasks, or when I see Mom so beat down. There is hope that it won’t be like this forever. There is hope, not that life goes back to normal, but that God will use such a heavy time to do something good. Most of my hope lands in the eternal category, as I’m realizing that putting my hope in temporary things is simply foolish, like storing my good chocolate bars outside in the sun. This really can’t go on forever. At some point, good will win over evil. At some point there is relief. There is rest and glory waiting. One with no more pain, no more tears, no more suffering. And angels and an entire host of suffering saints are watching and, I hope, cheering us on to not give up. To keep going one more day. I know I would regret hitting the escape button on a fire God intended. If he puts me through it, it’s for a reason. I want the reward from the trial. And the only way to get there is through. Like the cross.

Is there a year retreat available after this season is done, where I can do my emotional processing of this whole ordeal, cry whenever I need to, rest and sleep, enjoy something beautiful, and reconnect with my family? I doubt it; it’s just what my heart wants. If you know of one, call me.

You know. You prayed. You cried. You ached.

Til the tears became blood. You asked

Is there another way?

I want out, God. Please. And you breathed.

Then you waved the white flag.

Surrender. Release. Not my will but yours be the one

That is done here. I give up my way

To do it Your way.

Whatever it takes. Whatever it costs. It’s your day.

Then He sent angels. He gave you the strength

To be horribly broken. And to lose him.

Now because of you I choose

To trust the one who’s sending me angels

Rides, medications, food

Prayers, money, presence and O2

You name it, we got it

All because of you.

Now I don’t get it

Never would have asked for it

I hate it, miss my babies, my cat,

Miss my husband, miss all that I had

But this blessing in curses is worth it

Because I follow you in your service

Taking on the cross for a purpose

You loved me enough to bleed

What else can I do but receive and give that kind of love

To the people around me in need?

It’s not easy, it’s not a comfort thing.

No, it costs you everything

Yet you give and you get

More than you ever could know or expect

The treasure in hell

Is seeing the curse lose its power

Reversed. Doing God’s will instead of destruction

And twisted wreckage becomes blessings.

It’s not about me. Not comfort, not God aiming to please me

It’s greater than that. He’s aiming for glory.

Far above what I see. Joy and wonder.

He’s for me.

He’s with me through fire, through flood, through hurricane.

Though my bones may be snapped

Though my brain is one step from insane.

He’s holding me up, weeping, counting the tears.

Sees every hurt caused by indifference

Advice, and well-meaning ignorance.

He gets it. He’s there. Our Savior suffered

Still does. With us.

I can’t hold on. So he does. For me.

So one day I will see him in glory.

The tears water something greater. Touch something higher.

It’s like we’re walking through fire.

Burning all false desire.

Making me in his image. Painful? Yes. But it’s worth it.

Won’t ever deserve it.

Because you went first, and you’re with me

I’ll do it.

Sustain this shell of your daughter

While I’m held by my Father.

Give me faith to endure it

And believe that it’s worth it.

Some day I hope I can find more humor in the day-to-day. It came to me more naturally before 11/20, and now it’s a lot harder. In this week off, I have gotten a lot more family time, which tends to be an avenue for laughter. One experience being with my three boys in the pool Saturday. Jonathan was throwing a plastic ball to Caleb, but missed and amazingly hit me straight on the top of the head while I was doing my water-running. I have no idea what it looked like, but it was a one in a million shot. Titus saw the entire thing and burst into that best kind of belly laughter coming from a four-year-old. There’s nothing like it. No filter, pure hilariousness. It took him at least three minutes to stop.

Today I’m feeling more emotions at the surface. Respite is ending tonight. I’ll be getting ready to move back in with Mom for the undetermined future. This week has been such a gift. I love it, and my heart feels like it’s being wrenched out of my body again. It breaks when I think about leaving my family. I miss giving Titus kisses in the morning, and “eating his neck” just to hear him giggle. He’s been clinging to me a lot while I’ve been home. Greg snagged tickets to Kung Fu Panda 4 Saturday afternoon, and Titus skipped his seat and snuggled right in next to me and used me as a pillow for two hours. That’s when it started to hurt. Grace and Caleb have been so responsible, taking ownership of the cat and their schoolwork and helping their little brother. Each time I see them, I see so much growth. They tell me they are sad when I leave, and it’s harder for them to verbalize it. Jonathan is more contemplative, and he internalizes a lot of his questions. Then when we spend time together, they come out. He and Caleb ask the most about Grandma’s treatment. He plays well with Titus and is his buddy through the day, reading books to him, and is the one Titus asks to snuggle with the most. He’s my caring, aware-of-people’s-feelings one.

I see so many ways they’ve grown without me there. It’s been encouraging to see, that even while my heart breaks missing them, they are maturing and doing well overall. A good reminder for me that while they need me as their mother, they are also getting their needs met through other means. They’re learning. They’re developing in their character. They are getting the chance to step up. The double-edged sword of grief. Good coming out of bad.

I love my family. I love them very much. It is one of the hardest things to drive away, not knowing when I will get to see them again. We don’t have an end date on the calendar with cancer. We have benchmarks, but no idea when they will happen. Right now, the goal is to get to the end of treatment (currently April 23), then Mom needs time to rebuild her strength. So I leave my family to care for my mother in what feels like the fight of her life.

Something hit me on Easter Sunday, involving family and some other things. I got to play in our Easter worship band, something I love doing and didn’t think I would have the capacity for this year, but thanks to Mom’s friend, I did. Many people just opened their arms and welcomed me back. Some shared the load by hugging me, feeling some of the pain with me. Some asked where I’ve been. The tears started coming when one of my pastors came up to the piano, put his arm around my shoulder and asked, “Would it help if I do a Costco run for you? I can even bring it to Issaquah.” Until that point, I had seen our church family as mainly ones who can support Greg, because he’s closer to them than I am, and he’s single parenting and working and overwhelmed daily. That simple ask helped me see how isolated I have felt in Issaquah, and how I didn’t need to be isolated. I can still ask for help. Another sweet friend offered to drive up just to visit sometime with her new baby. I was reminded that day that I’m not alone. I’m not forgotten. There are people who want to help take care of me, too.

My highlight of the day came while playing one of the songs in our set. We were a group of people, gathered together, many worshiping Jesus, and in that moment, I felt this awareness of being with family. It was a glimpse into the eternal. It was a moment where the curtain was drawn back, and I saw a preview of what’s to come. I saw that this is what we’re waiting for. Some day, the entire family of God will be together, spanning time and nation, praising Jesus. No more will we be distracted or weighed down by other things. No more will we suffer. In particular, no more will we think marriage, sex, relationships, family, career, accomplishments, image, money, or anything else is ultimate. No more will our hearts play this tug-of-war. What we rehearsed on Sunday was a small picture of the reality coming. It hit me hard.

You see, while I love my family dearly, they’re only temporary. They’re not the real deal. They’re a picture of what God’s family is and will be. While I love marriage and sex, they’re also temporary. They’re a picture of the real deal, the relationship between Jesus and his church. While I love relationships, people aren’t the ones whose approval I need most. I could keep going, but perhaps that’s redundant. Tim Keller says that one of the things suffering does is reveal our idols. If we’re responsive to the fire, I believe suffering can be the tool which burns them away. This is one of the kindnesses I’ve seen in my current fire. God has shown me that nothing I have and could cling to will give me total satisfaction. He’s shown me that nothing is “safe”. Husband, kids, house, job, situation, relationships, church, health, mental clarity, anything, could be gone in an instant. Like Job experienced, it could be here one day and gone the next. The LORD gives, and the LORD takes away. We entered with nothing, we leave with nothing. All these things are gifts, but not the ultimate gift. Is my heart’s desire truly Jesus? Is it really him I want, more than what he can give me? If God strips away everything but I still have him, is that enough for me?

That’s how suffering reveals our heart’s deepest desires. I’ve seen ways I have wanted other things more than God. I’ve wanted comfort. I’ve wanted certain people in my life. I’ve wanted stability. All more than I’ve wanted God himself. And thanks to suffering, I see that now. I didn’t before, when things were “going well”. Now this pain brings me face to face with the stark reality that all these things, while lovely in their place, can never satisfy my soul, and were never meant to. They are the gift, not the Giver. And it’s God’s kindness to me to point that out, even when it hurts like hell. Because when I worship these other things, it keeps me from the very best. I only need to remember how many things we do for our children as their parents are for the kids’ good, yet it feels terrible at the moment to the child, who doesn’t and can’t understand. We’re like that, too.

So with God’s help, I will enjoy my family as long as I have them, but worship the Giver of my family. Not because he gave me my family, but because he is worthy of it. And whenever he sees fit to take these temporary blessings away, I will grieve deeply, and hopefully be able to say what Job did. “The LORD gives, and the LORD takes away. Blessed be the name of the LORD.”

The last thing I want to say about that moment in our worship set was the impression God gave me of family. The family of God is where it’s happening. We need to love and pour into our earthly families, absolutely. Yet getting together with the family of God reminded me that they are it. Brothers & sisters, mothers and fathers, aunts and uncles, nieces and nephews. They’re all there! They are the permanent, forever family. Without detracting from the biological one, those in God’s family gets to start living like it now. Loving each other, treating each other as family, and supporting each other the way Jesus has done for us. Sometimes we Christians can miss it in either direction: ignoring the family at home or placing them above all others. As I err on the side of idolizing them, I’m learning that just like everything else, my husband & kids are a gift to enjoy, and I must hold them open-handed.

Sunday at church I was walking up to take communion, and the tears came. Unplanned, unexpected. They just come when they come. My friend Kim was serving, and I managed to tell her that this was the first time I had been able to take communion in awhile, and I didn’t realize until that moment how much I had missed it, and how I would miss it as I’m preparing to go back to Mom. She hugged me while I cried, and cried with me. I miss walking up to take communion with my family, even if it’s people I have never met, rehearsing that Jesus’ body was broken and blood was shed on our behalf so we could become part of God’s family. There’s a kinship, something eternally deep we share in that moment, and it’s very powerful. Today changed communion for me, deepened it in a way comfortable living has not.

I miss my sisters and brothers, my mothers and fathers, the sweet little children. I miss my family. I couldn’t do this apart from you all holding me up. Thank you for loving us and helping us.

So here is my family picture from Easter Sunday.

In a few of my spare moments, I’ve been watching “Jonathan and Jesus” on Amazon prime. It follows Jonathan Roumie, the actor who plays Jesus on The Chosen. It is quite an enlightening glimpse into his world and how portraying Jesus affects him. In one of the episodes, a friend of his addresses one story in Jesus’ life that will be part of The Chosen, but hadn’t been filmed yet. He asks Jonathan, “When Jesus was about to raise Lazarus from the dead, why did Jesus weep?”

His friend was referencing John 11, verse 35. Shortest verse in the Bible. Jesus’ friend, Lazarus, was sick. His sisters, also Jesus’ friends, had sent for him, asking Jesus to come heal him. Instead of rushing to his aid, Jesus stayed where he was two more days. Then he came. In the interim, Lazarus had died and was placed in a tomb. He had been entombed for four days. Decay had set in (as his sister, Mary, tried to remind Jesus when Jesus told them to take away the stone: “Lord, there will be an odor.”) If you read the whole chapter, you see Jesus’ intention in all of it. He intentionally waited to come until Lazarus had been dead and decaying in his grave. He intentionally came back to a dangerous area, where people were seeking to arrest him. He has these intentional conversations with Lazarus’ sisters, Mary and Martha. It is very evident that Jesus is on a mission, and Jesus’ mission is the glory of God (11:40).

So why did Jesus weep? As you read the narrative, you see that Jesus is deeply troubled, moved in his spirit, as he sees the people weeping for Lazarus. There are many sermons on this section of Scripture, and I don’t mean to write another one or summarize the various perspectives on what it means that Jesus was deeply moved and troubled. I appreciate Jonathan Roumie’s answer to his friend’s question. Surprisingly to me, his friend’s question bothered me. It hit me differently than it has before. His friend was honestly asking, “So, if Jesus knew he was going to fix it, if Jesus knew that he was about to raise Lazarus from the dead and everything would be okay, why did he weep? Why not respond to all the friends and family weeping over the loss of Lazarus with something like, ‘Hey man, it’ll be okay. I’m here now. It’s all good,’ or some other reassuring statement more fitted to 1st century Jewish culture?”

His question bothered me because it represents something very pervasive in Christian culture today. Something I’ve been told, directly or indirectly from so many sources that it’s hard to pinpoint. Something I’ve believed for years and am now unlearning. It feels like it’s the air we Christians breathe, and since it’s air, we don’t often take the time to analyze it. We just breathe it and go on. But this valley God plunged me into with my mom’s cancer and intense suffering has given me new eyes. I don’t see things the way I used to. I’m still figuring out this new vision, and as I am, this pervasive belief in Christian culture says something like this: “When grief or tragedy or death or devastation strike, sure, it’s okay to cry, but not too much. You should be rejoicing. You should be celebrating, because Jesus wins at the end of it all. Jesus resurrects. Jesus is victorious! Too much expression of grief or sorrow isn’t okay, because it shows a weak faith.”

I hear the honest inquiry: “Why did Jesus weep?” Why did he weep, when he was going to make it all right again? Why on earth would Jesus grieve when there was a massive victory over death as Lazarus rose from the dead, and celebration minutes away? I also hear the implied message from my experience: Why cry when you know Jesus will make it better? Why weep since we know the end of the story?

Well, if we strictly look at this passage in John, we see that our perfect Savior wept profusely when he knew the end of the story. Reading some commentaries leaves me understanding that the word “wept” roughly translates “to burst into tears”, also implying strong anger. Francis Schaeffer says in The God Who Was There,

“Let us go to the tomb of Lazarus. As Jesus stood there, He not only wept, but He was angry. The exegesis of the Greek of the passages of John 11:33 and 38 is clear. Jesus, standing in front of the tomb of Lazarus, was angry at death and at the abnormality of the world—the destruction and distress caused by sin.

There are many other instances of weeping and lamenting in the Bible. I learned from Dark Waters, Deep Mercy by Mark Vroegop that 1/3 of the psalms (Israel’s songbook) are songs of lament. Compare that to what you hear on mainstream Christian radio or your worship service. Do you hear at least 1 out of every 3 songs crying out to God in utter honesty about personal pain, injustice, wondering where he is and why he isn’t acting, asking him to move and deliver? Then rehearsing who he is, even when you don’t feel it? Or sometimes, just ending with a complaint? Those songs from Israel were meant to train God’s people up. We need modeling on how to rejoice, celebrate, worship, lament, and grieve. The Psalms do it all. We tend to do it in part.

I’m learning that lamenting is Christ-like. I’m learning that strong emotions, particularly the grievous ones, are part of living like Jesus lived. I’m learning that we Christians have room to grow in becoming more like Jesus in how we grieve. I never saw that before or understood it until God threw me in the deep end of suffering. There is a lot to unlearn, and a lot to learn for the first time. For example, the “air I breathed” growing up taught me nothing about grieving. So when I was faced with it, I was at a loss. What should I do? I thought my strong feelings of anger and sadness were wrong. I thought that I should somehow be able to feel happy, and wondered what was wrong with me that I couldn’t. I couldn’t force myself to believe the platitudes that come my way. I felt very out of place with deep sorrow, because I couldn’t find many other people or examples of how to walk through it.

The trouble is when we don’t know how to lament, we don’t know how to deal with our pain. And as Jesus demonstrated, living in a sinful world means you will encounter deep pain. You will have the need to grieve. Jesus did. If we don’t learn how to lament, we stunt ourselves and the next generation. We miss part of growing into the image of God. We affect our witness to the watching world who is wondering how we Christians deal with the undeserved pain of simply being alive, and the unfairness of suffering (meaning the suffering we have not brought upon ourselves, but the suffering that exists because the world is broken). A friend of mine who knows this suffering world well, and has helped me begin learning how to lament, mentioned to me, “I think people can learn this without being thrown in the deep end. I think it’s possible.” I hope so. Many days into my mom’s cancer journey, I wish I had taken the time to humble myself and acknowledge that I had no idea how to suffer well, how to grieve, and how to lament. Granted, I remember grappling with this question of suffering since my early 20s, and reading Tim Keller’s Walking With God Through Pain and Suffering as I saw others in my life being hit with incredibly painful seasons, and wanting to help. Perhaps experience really is the best teacher. I don’t know.

Many of us simply want to be comfortable. That was my story, and sometimes still is. We worship the idol that keeps us feeling as great as we possibly can. Why disrupt it with learning how to grieve and lament when we don’t have to? Seems like a waste of time and energy.

It is a waste, if this life is all we have. If we’re living for us, for now, in the moment, why on earth put yourself through any more trouble or pain than you must? But if the Bible is true, if Jesus really was and is who he says he was and is, we need to pause and take a good look at him: the Suffering Servant. We need to learn what to do when tragedy strikes. We need to learn what Romans 8 tells Jesus’ followers to do: suffer with him in order that we may also be glorified with him. Feel our deep pain, bring it to the One who gets it, who suffered on our behalf, so we may also share in his glory. I believe that those who have tasted the deepest bitterness of this life are the ones who will rejoice in glory the most with Jesus in the next one. And those of us who may have believed in Jesus but worshiped comfort and sought to distract or numb ourselves from the suffering of being alive, will find ourselves with him but wishing we had done the good work of entering our suffering fully with Jesus. Often we hear we should love like Jesus. I agree. We also need to lament like Jesus.

I had never thought of my suffering as a kindness of God to me. Now I am beginning to see his kindness to me in my pain. Our human brains have a hard time comprehending this: a God who could stop the horrific season, but does not, in order to bring about something so much greater than we could ever have imagined. The cross being the primary example of God doing this (Jesus’ example of praying in the garden yet another gorgeously painful picture of how to lament). He wounds so that he may heal (Hosea 6:1).

We don’t understand. We may not understand the all-difficult question we ask in our pain of “Why?”. We don’t have to understand. Tim Keller flushes this out beautifully in Walking with God (mentioned above). Christianity is the only belief system I know of where the leader suffered at utmost cost to himself to save humanity and all of creation. If anyone gets it, he does. Now I’m going to tell a few things to myself, that I need to remember and you’re welcome to listen in!

Jesus gets your pain. He gets the grief. He won’t be overwhelmed by your anger, your fear, your questions, your doubts, your gut-wrenching weeping. No, indeed. He welcomes it. He counts your tears. He weeps with you. And one day, you’ll get to share in a greater joy that won’t even compare to the worst of sleepless nights and a wet pillow here. One day all those tears will be gone. So cry them now. Otherwise, what will he wipe away?