It’s the last day of the month, and as I look back over the blogging schedule I set for myself in March, I could let myself feel disappointed at the posts I just didn’t get to.
But, I don’t. I know that this month at least, I gave the best I could give.
See, two weeks ago today, my baby girl had eye surgery. It’s been a huge, exhausting, overwhelming couple of weeks. And yet here I am, typing a blog post at midnight. I just really feel it on my heart to share a bit of her journey.
This is my daughter’s story, but it’s also mine… and yours.
It’s yours if you’ve ever faced a situation that scares you silly….
If you’ve ever worried over your kids, or waited for medical news with your spirit unravelling in fear…
If you’ve ever longed to throw off the burden of stress you’ve been carrying and replace it with a peace you can only dream of…
This post is for you.
Allegra was 4 months old when her GP first noticed a slight inward turn of her right eye. At the time, it was so subtle that I couldn’t even see what the doctor was talking about. The advice was to wait and see if it would correct itself.
It didn’t. As Allegra grew, the turn slowly became more and more pronounced. It happened so gradually that, to be honest, it took us a while to recognise that she had a problem. Her eye wasn’t crooked all the time. Often, it looked fine.
It got worse when she was tired or when she was trying to focus on something nearby.
But most of the time, it wasn’t that dramatic. Allegra’s slightly wonky eye kind of just seemed like part of her.
It’s funny – I think before I had kids, I’d imagined that I might feel bothered if my child had something glaringly “wrong” with them. But the love in a mother’s heart is so overwhelming that to me, it has never felt like my child has anything “wrong”. It would be impossible for me to love this little girl one iota more no matter how she looks. We adore and cherish her and think she is so, so beautiful just exactly the way she is. In fact, that slightly wonky eye makes her just that little bit more adorable to us, because it is so much a part of “her.”
Except as it turned out, she didn’t have a lazy eye.
When we finally got in to see the opthalmologist, he immediately picked up something we’d never noticed before. Allegra was not seeing out of her crooked eye. With the “good” eye covered, her other eye swam around and refused to fixate on small objects.
He examined inside Allegra’s eye, and told us there was a problem with her optic nerve. He wasn’t 100% sure of what he was seeing, but he thought it looked like something called Morning Glory Syndrome. Apparently this is a rare congenital defect that causes low vision or blindness in the affected eye. Rare, as in, a one in a million occurrence.
He’d never seen it before, so he referred us down to Brisbane to see a paediatric opthalmologist who could confirm the diagnosis.
We went home with questions swimming through our heads. How had we not picked up before that Allegra was virtually blind in one eye? She’d always seemed to be looking at us with both eyes. Had I done something wrong during my pregnancy to cause this defect? What would the implications be for our little girl?
Within a couple of weeks we found ourselves in Brisbane, where the diagnosis was confirmed. Yes, Allegra had Morning Glory of the optic disc. No, it could not be corrected with surgery or glasses. It was an anatomical defect, or as our new opthalmologist put it, a “hardware issue.” The best we could hope for would be to salvage what little vision remained by patching her good eye for 2 hours a day, in an attempt to strengthen the disused muscles of the weak eye.
But that wasn’t all we had to worry about. The opthalmologist explained that Morning Glory Syndrome is closely linked to brain abnormalities, particularly in the mid-line of the brain. The next thing we knew, we’d been booked in for a rush MRI in Brisbane within the week.
We were in the middle of moving house at the time. Chaos surrounded us from within and without. Brain abnormalities? How could that be possible? Allegra’s development had always seemed so normal.
A week later we were once more on a plane to Brisbane and on our way to hospital. I felt nervous about putting our baby girl under a general anaesthetic; nervous about how long she had to fast before the procedure – no food or water until 4 o’clock in the afternoon! She was only 18 months old: how would she cope??
I was worried about the outcome of the MRI, too, mostly because of the urgency with which we’d been booked in. But it all felt a little surreal. I don’t think I ever truly expected them to find anything wrong. After all, she was a normal, happy little girl in every way. Surely we’d have had some indication by now if there was any sort of maldevelopment of her brain.
When we met with the opthalmologist a few days later to discuss the results, however, her mood was brisk but serious. She explained that the mid-line of the brain was normal (thank God!) – but before we could let out that subconscious breath we’d been holding, she told us they had found another anomaly. Allegra’s right optic nerve was thickened – a condition that was not, she told us, associated with the Morning Glory syndrome. Apparently it could be indicative of a glioma. Allegra’s results would need to be reviewed by a sub-specialist – a paediatric radiologist.
Lost somewhere in all the medical jargon, I asked, “What did you say it could be, again?”
“A glioma,” the opthalmologist repeated. She rattled off a few sentences of apparent explanation, which could’ve been in another language for all I understood, and told us we would have the results back within the week.
Standing on the train platform 5 minutes later, I Googled “glioma” on my phone.
I will never forget how it felt to have the words “BRAIN TUMOR” flash up on that little screen.
In a haze, I skimmed pages of information. Impossible, ridiculously awful words.
Optic nerve glioma is a rare kind of cancer, usually slow-growing and found in children.
Gliomas are rarely curable. The prognosis for patients with high-grade gliomas is generally poor… Of 10,000 Americans diagnosed each year with malignant gliomas, about half are alive one year after diagnosis, and 25% after two years.
A person with an optic nerve glioma usually experiences loss of vision… They are typically difficult to treat due to the surrounding sensitive brain structures.
Surgery… chemotherapy… radiation…
There I stood in the middle of the train platform, tears of shock and disbelief pouring down my face.
Two weeks ago we thought our daughter had nothing more than a lazy eye.
And now we were being told she could have a brain tumour?
It felt like a trapdoor had opened beneath our normal lives and without any warning, we were dropping into blackness. Nothing to grab onto. No end to the plummet. Just the upward lurch of the stomach and fear balled tight in the throat.
For two days I couldn’t eat and couldn’t sleep. The terror was immediate and all-consuming, like nothing I’ve ever known before or since. I hadn’t truly believed that Allegra could have a mid-line brain defect, but this… this felt different.
The more I read about it and discussed it with medical-professional friends, the more the fear grew. Optic nerve gliomas were slow-growing. They were usually diagnosed in children around 1-2 years of age due to loss of vision in the affected eye. It was highly likely that Allegra could have reached 18 months with no other symptoms of the tumour except for progressive vision loss in her right eye.
What’s more, the opthalmologist had given us no other possible explanation for the abnormal nerve. I felt sure that she already knew what we’d find.
I spent hours on end crying at the kitchen table. I couldn’t pray. Less than 2 months earlier, we’d lost our precious niece Imogen, a twin born at just 24 weeks. The grief was still so raw. I struggled to trust God with my daughter’s life. How could I, when just down the road from us, two parents would cry themselves to sleep because God had not spared their daughter’s life?
I knew that He heard my prayers, but what if I didn’t like the answer He gave?
They talk about thin places, those moments when the barrier between this world and the next grows transparent and permeable. I’d experienced plenty of those in the last little while. Praying outside a hospital room as a critically ill premature baby is mercifully taken off life-support. Holding my niece’s tiny lifeless body in my arms, stroking her petal-soft cheek, feeling her Mummy’s body shake with silent sobs beside me. Watching her Daddy carry a baby-sized pink coffin from the church in his arms. Weeping at a kitchen table as I contemplated our own future with despair. Life and death had never felt so weighty, so present, so frightening.
Things like this didn’t happen to people like us. Except they already had. And they were.
It was two days of the worst hell I can describe. I couldn’t let go of my fear, because that would mean trusting God, and how could he be trusted? I wanted my daughter to live – but what if He had other plans?
How could I possibly come to terms with letting her go, when she was the most precious thing I’d ever been given?
And then something happened.
There came a growing awareness in my heart that this holding on, this clinging to fear, was hurting only myself. My fear could not protect my daughter. My fierce lack of trust could not protect her.
I’ve been in love with God for so very many years, and he had always shown himself faithful. Even in the midst of grief, when we lost our niece, his presence was there. His comfort. His strength. His hope.
I couldn’t do this without him. No matter what the outcome – I needed him beside me to walk through the valley.
I knew I needed to get alone with God and pour out my heart to him, really work through how I was feeling, but with three small unsettled kids and a house full of boxes I’d barely begun unpacking what with all the back-and-forth trips to Brisbane, finding the time for a long indulgent chat with God seemed like a near impossibility.
Then, one afternoon, driving over the bridge with all three kids in the back and the late afternoon sun slanting all bright and golden into the car, I just all of a sudden knew, there will never be a better time than right now.
I finally let myself open my heart to God.
Tears pouring down my cheeks, I repented of trying to retain control… of clutching the situation to my chest with clawed and fearful hands and believing even for a moment that my God, my saviour, my rock – the one who has always, always been faithful to me – that somehow he cannot be trusted.
I thought I’d learned the meaning of surrender… but I learned it again that day.
These are the words I wrote down when I got home:
No matter what, I trust him. No matter what, I love him. No matter what, I will give him praise until I draw my last breath on this earth.
I don’t know what the future holds, but I know who takes my hand and walks beside me into an unknown that is fully known to him.
At no point did I ever feel like God was telling me Allegra did not have a brain tumour. In fact… for reasons I can’t even describe… I felt certain she did. That feeling did not leave me.
And yet… and yet.
All fear was gone.
A day later, I described what happened on Facebook:
It’s no exaggeration when I say the change was immediate. The dread left me and I was filled with a peace that I can only describe as supernatural.
For the past three days, I’ve actually felt happy. Yep – HAPPY. The worry is just… gone. There is no way I could have manufactured that transformation on my own. I’m a worrier, people. I get anxious about piddly stupid stuff. And this is not piddly stupid stuff. My 17-month old little girl could have a brain tumour. This is BIG stuff, bigger than anything we’ve ever faced.
And yet, I have peace. Not partial peace: complete, all-encompassing, overwhelming peace.
It’s not my doing – I’ve already proved how capable I am of losing it completely in the face of a crisis. I’m no-one special or strong, in fact I’m much more prone to be weak and emotional. This peace… this is a gift from God. Here’s what he promises: “I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid.” (John 14:27 NLT)
I share this because his peace is promised to all of us, if we’ll receive it. If God can give me peace in the face of this crisis, he can do it for you in your life.
It was a miracle… there is no other explanation.
Only God could take my crippling fear and replace it with his perfect peace in a single instant.
The peace I give is a gift the world cannot give.
The world can give us positive thinking, encouragement, enjoiners to keep our chins up and carry on.
It cannot give us a peace like I talk about here.
That is because this sort of peace can only come from God.
Are you facing a situation that frightens the bejeebers out of you? A situation so impossible and scary that you don’t know how you’ll survive it, let alone think positively about it?
God doesn’t have the answer.
He IS the answer.
A week after the biggest faith test we’ve ever had to face, Allegra was given the all-clear from the presence of a brain tumour.
I have never felt so thankful.
So many people were praying for a good result for her. And yet… to me, the biggest miracle was not her clean bill of health. It was the fact that God enabled me to face the horrific possibility of losing my daughter with a peace that doesn’t even make sense. A peace so ridiculous, so impossible, it cannot be true.
And yet, it was.
I found my trust being put to the test once more when Allegra came out of eye surgery last week. It was day surgery; a straightforward procedure to straighten her inward-turned eye, as recommended by her opthalmologist. As she came out of the anaesthetic, sleepy from the morphine, she snuggled into my shoulder, leaving bloodstains on my lace sleeve. She slept on and off as I cuddled her for two hours in recovery.
When I finally got a chance to look properly at her eye, something did not seem right.
Her eye that had been turned in was now pointing significantly outward.