“I don’t know how you coped so well.”
“I don’t know how you do it.”
“You seem to be doing so well.”
I can’t tell you the number of times I heard these statements during the year my son was sick, and the year after his death. Statements meant as an encouragement, statements that came from kind hearts, and statements that show how easy it is to put up a facade and fool people, or perhaps how private grief can be. But, I guess, although my husband and I weren’t coping “well”, and we certainly weren’t ‘doing it all’, we were paradoxically, doing ok. Thanks to a lot of assistance from parents, friends, family, school teachers, and prayers from so many people, thanks to hospital staff, a great social worker, and kindness from strangers, we did ok. And sometimes, muddling through, trying to juggle everything, is enough. Standards change, and ‘ok’ is now the new thriving. We were not ‘ok’ with our son’s health declining before our eyes, but we were ok with each other, we were putting dinner on the table for our other kids, keeping up with the washing, and fulfilling the work commitments we had made.
But emotionally, our hearts were breaking, there was very little sleep had by either of us, and our new ‘normal’ consisted of hospital stays, hospital tests, hospital appointments that ended up taking all day, regular medication handouts, temperatures being taken at least twice daily, sitting by our son as he injected painful medications into his thighs morning and evening, and figuratively holding his hand as he dealt with a huge burden and sickness.
I’ve had six babies, and the exhaustion that descends after a new baby is born, is somewhat akin to the exhaustion I felt when my son was first diagnosed with a brain tumour. Except, of course, this time, the exhaustion had no joy to hold on to, no cute smile at six weeks to keep you going, no date by which you know everything will settle down and improve, no end in sight at all, except perhaps that scary end that you really really hope will not come to your son’s case.
I remember after my fourth son was born, driving to a friend’s house and not remembering whether I had driven through red or green lights to get there. I was so tired, that travelling became a little foggy for a while. Looking after a child for nights on end through a round of chemotherapy feels a little like that, but added in with a deep, abiding, hidden from the child, sorrow that has an outlet only whilst hiding in the parents bathroom on the ward. Never have I heard so many deep, gut-wrenching sobbing cries as I did coming from the toilet cubicles opposite the children’s oncology ward. It’s the saddest reality spot in the children’s hospital, and yet, we each came out of those toilets, eyes red, with a plastered smile on our faces, pretending for the sake of our children, that all was well, and we were going to get through this just fine.
And in amongst this deep fear, and sorrow, in amongst this new schedule of life, in amongst the severe sleep deprivation, somewhere in there, what I held on to were Bible verses. Bible verses I had learnt as a child, Bible verses I was sent, Bible verses that sprang to memory as Christian songs played around in my head. Bible verses filled with promise, that gave me even an inkling of hope, of purpose, a reason to smile even through the sadness. God’s word is life. And if, after this very long introduction, you are wondering what the lesson I learnt about God’s word is, here is your answer: if you don’t know and understand God’s word when your child is well, you won’t have the emotional, intellectual, or physical energy to learn it while he’s sick.
Knowing God’s Word
I had a friend express to me that memory verses—learning a Bible verse off by heart—is no longer a needed practice because Bibles are so cheap and you can access any verse you want on your phone. I completely disagree. When you are at your most tired, waiting anxiously while your child is undergoing medical tests (a CAT scan, an MRI, a PET scan) there is usually no opportunity to get your phone out of your pocket. Often you are not allowed to use phones around those machines. You wait and wait and wait and wait, and it is distressing, and heart breaking. It is the perfect time to pray and remember God’s word, which you will really only be able to easily do if you have verses embedded in your brain from previous years when there was some spare brain space. Recalling verses and holding firmly onto the ultimate truths are what can keep you sane, and will help you maintain the status of ‘ok’ during the hardest times of your life.
Let me write that again. If you don’t memorise verses or passages when your child is well, you won’t remember or find them when your child is sick. Your brain is at capacity learning names of new words like ondansetron, maxelon, dexamethasone, doxorubicin, cyclophosphamide, neutropenia, cytotoxic. You have to remember many names of new people that enter your world, you must think about schedules, appointments, urine totals, temperatures, and so many more things. Your child is depending on you to be their spokesperson, to keep on top of this information. It is honestly so hard to put any other new information into your head. You need to know your Bible before your child is sick. And you need to know it well.
You know how there’s a verse somewhere that says something, and you can’t remember exactly where it is, and exactly what it says? When your child is sick with cancer, you want to know precisely what that verse says and where to find it. And you don’t have time to go rummaging through the pages of the Bible for an hour or so looking it up. And you don’t have time to google it, to trawl through the different options trying to find the exact verse you thought you meant.
One of the best things Christians did while my son was sick was sending me Bible verses: in emails, text messages, letters, or printed in big letters to hang on my wall at home. And when I say “Bible verses”, I mean the whole verse, not just a reference for me to look up. I did not have the time or spare hands to look up a reference.
I have known God as my Father from childhood. I have always understood that I am sinful, and need Jesus as my saviour. I have always put my trust in God’s promise of salvation. I’d had some hard things happen in my life before my son was diagnosed with cancer. Yet I learnt so much more richly what it means to put my trust in God’s Word of salvation, comfort, and hope during the year of my son’s cancer. I am not a runner, but I’ve seen a lot of running movies; the athlete has to pull out all the stops, give that little bit more at the end of the race, make it to the finish line. Similarly, I found that every last bit of energy and hope was pinned to God’s word – I needed it like I needed water to drink and air to breathe to survive each day.
God’s word, verses I had learnt throughout my life, were like precious jewels sewn into the lining of my clothes. Jewels I could take out and look at, hold on to, rely on day and night—when the lights were on and when they were off, when all I could hear was the whirring of chemotherapy pumps or the beeping of machines that needed refilling and the vomiting of children. The thing with lining your coat with jewels though, is that you have to have jewels to sew into your clothes. Learning God’s word before your child is sick is so important.
Understanding God’s Word
The second huge lesson I learnt about God’s word while my son was sick, is that you need to really understand God’s word.
You are vulnerable, so open to suggestion, confused and mixed up. And sometimes the verses that you know, the verses you have learnt, can become confusing. I really struggled with verses like Psalm 37:4. “Delight yourself in the LORD, and he will give you the desires of your heart.”
How much is enough delight for God to then heal my son, which is the desire of my heart? A verse, which in my rested state, I can explain very clearly, became a burden to my soul for a time.
“Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.” Matthew 11:28-30
How is his yoke easy and burden light? It felt so incredibly heavy. My eyes were too tired to keep open for much longer, my bones ached with grief and exhaustion, my head pounded constantly, and sorrow upon sorrow started piling up high. The situation was overwhelming. I sat by my son, while he expressed his sadness that he wouldn’t live to finish school, or get married and have children. Comforting and holding him, being a mother in those moments was so far from easy, and was a burden that I find crushing even recalling today.
“I lift my eyes to the hills. From where does my help come? My help comes from the LORD who made heaven and earth.” Psalm 121:1-2
This Psalm was a ‘go to’ in my memory verses. I would recite these two opening verses almost daily, to remind me of God’s strength, to remind me I was not walking alone, to remind me of my heavenly help.
But the rest of the Psalm became confusing to me:
“He will not let your foot slip – he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep.
The LORD watches over you – the LORD is your shade at your right hand; the sun will not harm. You by day, nor the moon by night.
The LORD will keep you from all harm – he will watch over your life; the LORD will watch over your coming and going both now and forevermore.” Psalm 121:3-8
The LORD will keep me from all harm? My son was dying before my eyes, declining slowly, and this Psalm, which had for so much of my life brought me huge comfort, suddenly became unbearable to me.
I learnt that it wasn’t enough to just know God’s word off by heart, I also desperately needed to understand exactly what God was promising, what God was saying. And at such a time of fatigue, there was precious little time to delve. I remember praying often for God to help me understand how these verses were still true and what they really meant. I begged God to heal my son and take these heavy burdens off my plate. I asked God to keep his promise to keep us from all harm, and eventually decided that this Psalm only applied to Israel and not to me, yet I wanted to hold onto those first two verses for myself. And I was pretty sure I couldn’t have it both ways, I couldn’t pick and choose which verses applied to me, and which didn’t, based on what I was experiencing.
So learn God’s word now, while you can. And make sure you understand what it means, because there will no doubt be a time when you will rely on that Word to keep you going, to reach that ‘ok’ that keeps you sane. God’s word is more precious than gold, it is sweeter than honey.
An epilogue, for those wondering…
As for me, and my struggles with those particular verses, I ended up with a few different answers. I remembered a song I’d heard years ago, where the singer had recited Psalm 62:5-8 to remind himself that God is not far away in times of suffering. And these verses became one of my biggest helps and comfort:
“Rest in God alone, my soul, for my hope comes form Him. He alone is my rock and my salvation, my stronghold; I will not be shaken. My salvation and glory depend on God, my strong rock. My refuge is in God. Trust in Him at all times, you people; pour out your hearts before Him. God is our refuge.”
I rested in God. My hope came from Him. He was my dependable rock, salvation, strength and refuge. I trusted Him, and I poured out my heart to Him many times day and night.
And God’s timing was perfect. As my son lay dying, I finally understood the verses in Psalm 121 and they became my joy. God’s promise wasn’t to protect us from all harm on this earth. How could that be true? He let his own Son die for us. But the night before my son died, I realised anew that God was promising to protect my son from all harm in eternity. And He was protecting my son’s life even as he died. And Psalm 121 became, once again, my favourite Psalm as I finally understood the most amazing promise of God for my son who died a few hours later.