“NO nap!” NO NAP!” “no NAP!” chirped a grinning little Pippa in her cutest sing-song voice when I walked in her room after (you guessed it!) her no-nap. I slid her crib a few feet over, back against the wall where it belonged and began picking up the stuffed animals littering the floor, each one a casualty of her resistance. Not only does she chuck her toys on the floor when she can’t sleep, but she rocks incessantly against the side of her crib. Sometimes the rocking seems to help her fall asleep, but sometimes it just sends her crib inching all over the room. I never know where I’ll find her bed when it’s time to get her up. After an unfortunate incident with some diaper cream I learned that I needed to baby proof the whole room, not just beside her bed!
Chris and I have had our own struggles with sleep throughout this journey as well. Sometimes he can’t fall asleep–for hours. Sometimes I can’t fall back asleep if I wake up in the night–for hours. Chamomile tea. Lavender oil. Magnesium. Foot rubs. A Dipper Full of Stars. That last trick is a children’s astronomy book I’ve read out loud to Chris countless times in the middle of the night. It’s amazing the way facts about the apparent magnitude of Serius can put one to sleep in the middle of the night! Yet sometimes even reading doesn’t work.
It’s frustrating. Especially when you know your whole next day is going to be dreadful as a result, but there’s just nothing you can do to force your body to surrender to that mysterious, yet delightful, sleep state.
Several weeks ago, after Chris’s November scan, I felt God whispering that the next stretch of time would be defined by rest. My task-oriented nature took this as my newest assignment. 1-2-3, Rest! Take all your anxiety, worries, and fears and just put them to bed and rest. If only it were so easy! Like Pippa rocking against the side of her crib with a duckie pacifier swinging from her mouth, I often find myself striving for rest, emotionally and spiritually. If I just pray more, determine to fix my thoughts on the good, miraculous and generous gifts God’s already given, or will myself to just stop fearing, maybe then my heart will be at rest and I’ll be able to float peacefully above the turmoil of our circumstances. Maybe then my chest won’t tighten and my stomach won’t sour when I think about upcoming blood tests or scans.
I see now that in many ways I’ve allowed myself to be like Pinocchio, a puppet with strings attached and controlled by Fear–each string a different manifestation of Fear’s hold. Each string a means of yanking me out of restful peace. Ever since we said goodbye to Elliott, I think I’ve viewed God and life through the lens of fear. What will God take or allow next?
After Elliott died, I remember wishing that I believed his death was just the result of a scientific aberration–the fault of nature. Science is so much less personal. But instead, I had to turn my broken heart toward the One who could have prevented his death, but instead allowed my heart to be shattered. Sometimes surrendering to Jesus is not a comfort for the weakest and most broken. It requires bravery and flint-like faith. It demands a decision to believe that who God is and what he says is truer than my crushed emotions.
The truth is, I have said Yes to God from the beginning. Choked it out in sobs, but then just as quickly taken it back and said No…You can’t. I can’t.
But I believe that God in his mercy tenderly scooped up my feeble, taken-back Yes, and gently whispered I still love you to my stubborn No. Then he took firm hold of those cords of fear and began cutting them one at a time.
When he said Rest, I don’t think it was an assignment; I think it was His gift.
Looking back, I am especially grateful for three fronts on which God has replaced a persistent fear with rest.
String One – Panic over Pizza Crust
He severed the first string early on when Chris and I switched to a healthier diet. Rationally I knew the healthiest diet wouldn’t be enough to combat his cancer, but it was the only line of offense within our control and subconsciously became life-or-death important. The problem was that I’ve never really been interested in diet and nutrition, so when every bite suddenly mattered, I panicked. I didn’t have a wealth of prior knowledge to draw upon or time to research. We picked a plan to follow, but implementation was stressful. Anytime Chris deviated even a little (I’m talking a piece of toast when his stomach was chemo-queasy), or didn’t follow through with elements of the plan (forgot his supplements at breakfast once), my stomach would tighten and I’d be anxious-angry.
It all came to a head one night at the grocery store when I nearly had a panic attack over pizza crust. Earlier I’d discovered a crust mix with the “right” ingredients in it. But they were out and we were leaving the next morning for a trip to a remote cabin. I frantically read the ingredient lists on all the other options and felt my old friend Fear tighten his grip. Tapioca starch. I don’t know what that is! Rice flour. Didn’t I read something about rice and arsenic? Tears began to well up, but my vision remarkably cleared. This is ridiculous! I’m crying over pizza crust! I quickly picked a mix and called my mom on the drive home.
All the lies I’d begun to believe spilled out in beautiful, freeing clarity. I’ve believed that if we don’t get Chris’s diet just right, he’s going to die. That getting it absolutely right is up to me because I’m the one buying and making our food. So essentially, if I don’t get the right pizza crust, Chris is going to die. Saying it aloud quickly neutralized this lie. My mom also reassured me, God would never put that burden on you–especially when he hasn’t equipped you for it. You grew up on hot dogs and mac ‘n cheese for crying out loud! You just do the best you can with what you already know and trust Him with the rest.
When I got home, I spilled more tears to Chris, asking him to forgive me for being so obnoxious and irritable about his eating. After all, he really was doing his part in sticking to our new diet as best as he could. We prayed, and snip-snip, the food-fear string was gone for good. A colossal weight was lifted and replaced with a lasting sense of peace about our approach to eating.
String Two – The Diagnosis
Freedom from the power of Chris’s diagnosis came a few months later. I wrote about this at length in a previous post, but essentially, in a moment, God freed me from the chronic torment of the words cholangio carcinoma. Those words had left me breathless with despair countless times, until finally, the name of Jesus Christ! filled me with courage–cholangio carcinoma may be a fearsome foe, but ultimately it too must bow the knee to Jesus, the all-powerful, all-loving. Again, another cord cut and newfound freedom and rest settled its place.
String Three – Pride in Performing
If there’s a way to transform good news into a new reason to fear, believe me, I’ll find it. In November, after our research oncologist surprised us by declaring, “We might be able to eradicate this cancer once and for all,” I immediately thought, Why us? Why would we, out of the thousands inflicted with this terrible disease, be offered such rare and inconceivable hope?! Over the next few weeks, I started realizing that I felt especially guilty about not writing more–not declaring the goodness and faithfulness of God as I should. I worried that I wasn’t spending more time in prayer. I felt guilty about not be a better friend. I felt unusually concerned about our inability in this season to spend more time with neighbors or students, to reach out to refugees, to find ways to serve young women in crisis pregnancies, to help people living in poverty, etc. etc. etc.
A week or so into the Advent season, I read about those dirty, poor, humble, no-name shepherds and was struck by the fact that God chose them to be the audience of the most beautiful, life-changing display of Good News for all time–a host of angels filling the sky with their glory and choral declaration of hope, followed by an invitation to go see God in the flesh for themselves…to feel his tiny fingers curl around theirs. And then afterwards they went back to their sheep, no doubt as changed men, but for all we know, to continue their lives in obscurity. They didn’t do anything.
Tears came (again), as I realized how bound I’d been by the fear that if I didn’t perform well enough, the mercy God has been showing us would end, or that our lives wouldn’t be valuable enough to God for him to spare Chris. Forgive me, Jesus, for believing I could somehow be good enough to manipulate your will. And thank you, thank you that I don’t need to do anything. Just be a shepherd and settle in on the hillside and watch in wonder and delight. Go see the baby and laugh in wonder at the gift. Return to my flock and rest in the greatest mercy ever given. Rest.
Surely goodness and mercy…
…will follow me all the days of my life (Psalm 23: 6). And they have. God began giving me rest before He even whispered the word to my heart, and he hasn’t stopped. We spent Christmas in Colorado, followed by a week and a half on a beach in Florida. We got more good scan and blood test results as well as miraculous news about the next step for Chris just this past week. (Post following soon with more details!) My prayer is that no matter what comes, no matter how God chooses to answer our prayers in the future, these gifts of rest will be so rooted and grounded in his love that they will be unshakeable.
In fact, the goodness and mercy that astounds me most is the way Jesus continues to draw my heart toward his, to settle me in his love, and little by little, string by string, free me from fear so that my heart can begin to truly rest.
The following are some snapshots of our time in CO and FL…images that only give a tiny impression of the rest and joy God freely gave during these times.
Another highlight for me was getting to spend a little one-on-one time with these crazy nephews!