In June, our less than two year old son was diagnosed with a brain tumor. Not just any brain tumor, but a large, rapidly growing one which destroyed his eyesight almost completely in a ridiculously short amount of time.
It took months from the first signs something was wrong, and a lot of pushing from us, for the medical world to find the correct diagnosis, only to discover that had it been a few days longer he would have been permanently blind. A few weeks and… well, I don’t want to go there.
Once diagnosed, the severity of our youngest’s condition was as clear as crystal. Immediately, surgeon’s schedules were hurriedly changed, an operating room freed and within less than one day of walking into the Children’s Hospital for an MRI, our son was on the table, fighting for his life. For nine hours. And after nine hours of waiting, a team of neurologists working on him, one blood transfusion, metal screws inserted and dozens of stitches sewn in his tiny head, the thing… measuring in at five and a half by three and a half centimeters…. the congenital brain tumor that was robbing him of a future was gone, but the havoc it wreaked was not. This was just the beginning of a very long journey.
Soon after his operation, complications in ICU arose, when his system wouldn’t take to the new ‘status-quo’, and it wasn’t long before multiple doctors came to deliver the news that we’d be possibly in their care for months. It seemed like they couldn’t say sorry enough times, their faces telling a story that I just didn’t want to read.
How in the hell did this happen to our son?
From the moment he left the operating theatre, our son was hooked up to just about every line possible, including one tube that drained the increased fluid from around his brain. This particular tube outstayed its welcome by a long shot, and there were others that remained well after his drain was finally removed, which, after multiple suggestions of a shunt, was a miraculous event in itself. Then, some lines started to shut down after weeks of overuse; use that included the hourly drawing of his blood, then infusions to replace it when he started losing too much.
There were days when we didn’t know what the next hour would bring, let alone twenty four of them. Days when the only way to get me to leave my son’s side and go to sleep was to force me, and, on one of those days, for my husband to wheel me to our bed in the parents refuge in a wheelchair after I collapsed on the floor. And I’ll never forget the time when I was called to his bedside at three in the morning, after one hour of sleep, along with technicians and doctors who were all woken at the same ungodly hour to run an emergency CT scan when things were going very wrong. I remember holding his hands in that CT room and praying to God to make everything okay. It really didn’t matter to me who was in the room or what they wanted to do. That was the most important thing to me at the time… And I remember our son, who was in and out of consciousness and hadn’t spoken for hours, looking up at me as best he could manage and in one moment of clarity, saying “I love you, mummy,” before closing his eyes and drifting away again.
Grace. Upon grace.
I don’t know what to tell you, except that for every attack on our son at the time, there was a counter attack, fueled by prayer and God’s grace. We almost lost him. But God had him. Every. time.
Like the morning when, as I held my son’s hand, his condition slipped… and as soon as it happened, the neurologist in the room ran across to him, calling to the nurses with this exact phrase:
“This is bad, get mum out of the room.” A phrase no parent wants to hear.
Well, I screamed in the hallway as the resuscitation equipment flew in with the hoards of nurses, my husband forming a blockade to stop me re-entering the room. I wanted to be with my son, and I wanted to punch my husband, who has always been my rock, in the face for not letting that happen.
Those minutes went on forever. Then, when it was over, and our son stable again, I was accosted by a team of doctors who were definitely concerned for my well-being; encouraging me to get some sleep as they stared at my wild hair and tear streaked, makeup-less, no-sleep-exhausted face. But it wasn’t going to happen, all I could say back was, “That was not okay. This is not okay. That’s my son. This is not okay. You can’t make me leave him. You can’t.”
Because I am his mother.
Why he wouldn’t stabilize, they couldn’t yet understand. During more than one conversation I was told that William had every doctor in that hospital completely baffled. His was a complicated situation, far more than we’d realized. And, like many complicated situations, they didn’t know what to do with him.
Still… in all of the events that morning; our son’s deterioration, my breakdown, something was happening simultaneously that I didn’t know about. I couldn’t have. But once I learned of it, that day made so much sense…
What was happening was that at the same time that the doctors were trying to figure out how to stabilize our son, my pastor, and my entire church were praying for him, together. Thousands of people, storming heaven for our son’s life. It was a Sunday, you see.
So it’s no coincidence to me then, that on that quiet, weekend morning, all of our son’s doctors met at the same time and in the same room and agreed on what to do for him, which was the catalyst for his recovery. Their meeting together like that and actually agreeing was something that ‘never happens, especially not on a Sunday’, according to a doctor who grabbed me in the hallways two days later, as though she couldn’t wait to share that fact with me.
Apparently then, prayer changes things.
It took another two and a half weeks – not months, for us to leave that place. In that time, we learned that his tumor, whilst life-threatening, was benign.Today, our little man’s recovery is ongoing, and his life will never be the same. He’s tired a lot, and he lives seeing the world now through an ‘irreversible’ (pfft) hazy, blotchy blur, for starters. One of his eyes is better than the other, but he sees. According to doctors, there’s a fifty percent chance of the tumor returning. I’m leaning on God to fix those numbers in our favor.
You know, I don’t know why this terrible thing happened to our son, but I think why is probably the wrong question. We live in a fallen world. Stuff happens and it’s completely unfair. What I do know is that my understanding of Ephesians 6:12 deepened during that space of time. We were in a fight for our son’s life, and we had no other way out than to rely on grace, and on prayer; two things that felt almost tangible at the time.
If you prayed for our son, I want to thank you. We felt it changing the atmosphere. If you’re still praying for him, I’m overwhelmed.
If you’re reading this, I appreciate it. Writing things down is my way of making sense of things, but I don’t so much share them with the world every single time.
This storm that threatened to tear our family’s life apart has, for the most part, passed overhead. In a million ways, it’s brought our little family closer. These days, I’ve slowed down. Things that were a priority for me just aren’t so much anymore. And every day when I see his grinning face appear by my bedside, I’m grateful. His life, and this journey, has taught me that all of the minutes matter. Every single one.
So please, go live them as though they really do.