I wake before dawn, my son’s cries prompting me to stumble out of bed and down the stairs to where he cries in the darkened kitchen. He’s looking for his Daddy but it’s too early so I scoop him up and carry him close to my heart back up the stairs.
I wipe his tears and his nose, get him a drink, and then tuck him back into bed next to his love bunny.
“Goodnight, Babe. I’ll see you in the morning. Mommy loves you.”
Back in bed I climb between the cool sheets, but now I’m awake and the birds are chirping and it’s May 10th.
A year ago today my 18 month old son fell off the back of a pickup truck.
My husband and I did all the things you do. We watched for drowsiness, nausea, vomiting, disorientation, swelling on the skull, lack of balance.
He seemed fine.
It was evening so we kept him up an extra hour or two and woke him every two hours through the night. Each time he responded appropriately and by morning we were less concerned.
He had a doctor’s appointment scheduled for the following day–his 18 month check up and immunizations. I took him in, deciding I would mention the fall he’d had last evening to the doctor just to be on the safe side. I could feel a bit of swelling over his left ear, and he reacted to some slight pressure, but otherwise was his normal happy self.
When the nurse called us in she felt the bump on his head and said she’d mention it to the doctor. We looked at the 18 month developmental goals. His speech was on the low side of average but I wasn’t worried. Kids are all so different and I hate the way we put them all in categories so early in life. His head circumference was on the larger side and I joked about my husband’s genes producing large heads. He had two routine immunizations, which he handled well.
When the doctor came in to see us she agreed there were no concerns about development at this point but said she was going to send us for a skull x-ray just to be on the safe side with his head injury.
“I’m probably going to regret this because if they see anything at all they’ll want you to get a CT scan as well but I’m going to do it anyway, just to be safe. We don’t want to miss anything,” she said.
I reluctantly agreed and we left with the x-ray requisition.
I had been through x-rays and CT scans and MRI’s before with an infant we fostered so I was not looking forward to putting my shy little boy through the process of an x-ray. I knew from experience the contraption they strapped tiny people into for an x-ray looked more like a medieval torture device than modern medicine. The worst part was that because the x-ray emits strong radiation waves, I was not allowed to stay inside the room with him.
I called my husband and let him know what was going on, irritation in my voice. I was frustrated that we had to put our son through this when it seemed that he was fine.
I went to the hospital as quickly as possible and they conducted the x-ray, promising they would send the results to my doctor who would call me to let me know what they revealed
By the time we got home we were both tired and hungry. I made lunch and tucked him in for his nap.
I had barely got back down the stairs when the phone rang and my doctor’s name flashed up on the screen.
“I’m sorry, they saw a small fracture so they’d like to do a CT scan,” she said, her voice apologetic. She didn’t sound worried, and reassured me it was probably minor but that they had to be extra cautious with head injuries.
I grudgingly woke my son from his very short nap and called my husband again with the news. By now I had let the frustration seep in and I felt like crying.
It had been a long day already and it was just past noon.
Immunizations, a skull x-ray and now a CT scan yet too.
We headed back to the hospital.
I felt horrible.
We were both grumpy and tired.
What did a fracture on a toddler’s head mean, anyway?
What have I done?
At the hospital the doctor reassured me it didn’t appear to be anything serious and gave him some sedation to help him stay still through the CT scan. It was a relief to have him sedated for the CT so that I wouldn’t have to listen to his fearful cries as we strapped him to the table and I stepped outside the room. It also gave him a chance to get some much needed sleep.
It was approaching dinner time and all I wanted was to be at home with my family.
Back in the ER unit across from the nurses’ station we waited some more, me trying to keep my son from falling and hitting his head yet again as he drowsily came out of sedation and tried to crawl off my lap. He was tipsy and clumsy and I had to laugh watching him as I tried to restrain his movements to keep him safe. Freezies and juice helped move the sedation through his body and reorient his senses.
I had no idea that day how often we would do this in the following months.
I kept my eyes and ears on the doctor as he came and went from the station across the hall. I tried not to let the niggling fear creep in as I watched him studying the computer screen and talking in low tones on the phone.
I sent messages to my sisters and mother-in-law on our family chat group, letting them know where we were and why. They promised to pray and sent hugs and kisses. By 5pm my mother-in-law let us all know that they, too, were sitting in an ER room as my father-in-law had broken his wrist at work!
We laughed at the irony.
Finally the doctor reappeared and I sat up eagerly, waiting for answers and hoping he would be discharging us soon.
Now, I would be able to recognize the signs that something was wrong;
The vague explanations, the carefully side-stepped questions…
We might need to be sent to Orillia, the nearest paediatric centre, by ambulance for monitoring over night.
Did I have someone who could bring me some clothes and essentials?
I called my husband and updated him, asking him to pack a bag of things. I wished he were here, and we discussed who should go and who should stay with the other kids. Both of us felt frustrated and anxious and our conversation was short and stilted. I didn’t want to go…I was scared. But I certainly didn’t want to stay home while my baby went either!
He promised to bring me some things when I heard more and we hung up.
The next time the doctor reappeared his eyes held concern,
“Is there someone coming to bring you some things? You will definitely be going to either Orillia or Toronto Sick Kids tonight.”
My heart dropped and I felt terror course through me for a brief second until I forced it down.
Sick Kids was not for minor falls.
Sick Kids was not for a small fracture or bruise.
“Is everything ok?” I forced out the words calmly, though my mind was screaming them.
He looked at me and said, “Why don’t we wait until your husband arrives and I will explain everything to you both.”
Looking back now, I can see that in that moment something resonated.
Everything was not ok.
This time on the phone my voice broke and I pleaded, “Please come now. They’re talking about sending us to Sick Kids!”
We both knew something had changed.
When he arrived the doctor came to us and pulled the curtain closed behind him.
I don’t remember the conversation except this.
Our son; our beautiful baby boy…had a brain tumor.
When they took a CT scan to examine the fracture more closely, they could see it. A huge dark shadow on his brain.
It took a complete reorientation to realize that this fall, this minor fracture, was the least of our worries.
Our son’s life was in danger. Not because he fell four feet onto concrete…but because he had a massive tumor growing inside his brain.
It wouldn’t be til almost a year later, sitting across from my counsellor with tears rolling down my cheeks, that she would help me see it.
“You know, He wanted you to know.”
We could see it faintly…the blessing in the fall…and spoke it.
But to hear the words, He wanted you to know.
He wanted to save your son.
When the doctor left with sincere, hushed apologies and a promise to return with more details of transportation soon, we crossed the distance between us and clung to each other, our son held between us.
We tried to process our new reality.
We’d be transferred by air to Sick Kids by the ORNGE Medics team. They’d be there to pick us up in an hour or less.
It is the little moments that I remember:
The numbness that took over my body as we went through the next hour waiting for the helicopter to arrive.
The way I collapsed in tears into my friend’s arms when she found me at the hospital just before we left, her shift just beginning. Her words, “It’s going to be ok. They can treat this.” And the news of her pregnancy; a light in the middle of the darkness closing in.
The way the chopper blades cast a whirlwind on us as we approached in the dusk, whipping my hair and carrying my son’s frightened cries up into the sky.
The utter confusion I felt when they asked, “When is the first time you were told his head was larger than normal?”
Were we supposed to notice it?
All the times he’d ever cried inconsolably or been sick or hurt came rushing back.
Should I have known?
Would another mother have known?
The way all of life seemed to hold its breath as we lifted up into the night sky. I looked down on the bright lights below; at my son fallen into an exhausted sleep on the stretcher and the medics sitting quietly opposite me in the dark. I heard the words almost audibly.
They held me in that moment of terror and brought a quiet peace I cannot explain.
Over the next twelve hours they told us more.
They told us our son’s tumor had probably been there since birth, steadily growing.
It was shocking in the worst of ways.
I felt helpless and betrayed.
Robbed of my innocence.
So where was God?
Where was He when my son was diagnosed with a brain tumor?
Where was He when a hundred needles were poked through his smooth baby skin?
Where was He when we had to hand our son over to a scrub-clad OR nurse and watch them take him away from us, his cries causing sobs to tumble from our chests.
Where was He when our son’s IV line slipped out of his vein and sat unnoticed, leaving him without the antiseizure medication he needed and causing his little body to begin seizing every few seconds?
Where was He when we begged for healing for his hydrocephalus but instead he had to undergo yet another surgery to insert a shunt? A shunt that causes other complications and dangers.
Why didn’t God heal our son when we asked him to?
Then the Lord answered Job out of the whirlwind and said:
Who is this that darkens my counsel by words without knowledge?
Where were you when I laid the foundation of the earth?
Who shut the sea with doors when it burst out from the womb, when I made clouds it’s garment and thick darkness its swaddling band, and prescribed limits for it and set bars and doors, and said, “Thus far shall you come, and no farther, and here shall your proud waves be stayed?”
What is the way to the place where the light is distributed, or where the east wind is scattered upon the earth?
Who has put wisdom in the inward parts or given understanding to the mind?
Who provides the raven its prey, when its young ones cry to God for help, and wander about for lack of food?
Do you give the horse his might? Do you clothe his neck with a mane? Do you make him leap like the locust? His majestic snorting is terrifying. He paws the valley and exults in his strength; he goes out to meet the weapons. He laughs at fear and is not dismayed; he does not turn back from the sword.
Is it by your understanding that the hawks soars and spreads his wings toward the south? Is it at your command that the eagle mounts up and makes his nest on high?
Will you even put me in the wrong?
Will you condemn me that you may be in the right?
Have you an arm like God, and can you thunder with a voice like this?
Whatever is under the whole heaven is mine.
Who is then he who can stand before me?
Then Job answered the Lord and said:
“I know that you can do all things, and that no purpose of yours can be thwarted. I have uttered what I did not understand, things too wonderful for me, which I did not know. I repent.”
(Job 38-42 excerpts)
And I fall to my knees in worship.
Because He was right there.
He was right there through 18 blissfully naive months as a monster grew inside my baby’s brain.
He was right there when we turned our backs for a second…and he fell four feet down onto concrete.
He was right there when our doctor sent us for a skull x-ray, just to be on the safe side.
He was right there when the very same day that our son was diagnosed, my father-in-law broke his wrist at work, leaving him without work responsibilities for 6-8 weeks. Instead he was busy caring for our two daughters and us.
He was right there when the surgeon smiled and said, “It went better than I could have expected. We got it all.”
He was right there when my gut prompted me to go to the nurse and say, “I’m sorry, I know I am probably just being paranoid but I feel like something is wrong.”
He was right there in that chopper, breathing words of peace into my terror.
He was right there for weeks before our son’s fall, drawing me back again and again to the words in the Psalms…steadfast love.
He was right there when we heard the words…benign. No cancer. No further treatment. Low probability of recurrence. “I don’t see why he shouldn’t make a full recovery.”
He was there.
He was our Shield.
Our Light in the darkness.
I still don’t have answers to the why’s, but they become less important when I see His sheer Greatness and my own smallness.
Suddenly, I don’t expect to understand.
Instead, the why’s turn to why not’s.
Why not us?
As I look around the crowded dining room at the Ronald McDonald Charity House, smiling at the now familiar faces. She bounces over, eyes shining and bright despite the fact that she and her family have been here for months now while her little sister fights the disease ravaging her body. This room is one of the most beautiful displays of joy amidst pain, generosity amidst difficulty and hope amidst darkness.
The reality is that every one of us is dying.
The world is broken and so are we.
Sin cast its dark spell and we are all vulnerable to it’s snare.
Today, on May 10th, I watch my son giggle alongside his foster brother — two tow-headed boys covered in sand and water.
Today, I watch him chatter to himself, copying his big sisters’ words and tones. For months he was oh so quiet and I feared he would never speak again. But the words keep coming faster and faster.
Today he roars at me while sitting on the toilet, my little lion, and giggles uncontrollably when I cover my eyes in mock terror. Potty training and copying his favourite story book.
I watch him run across the yard, one foot landing a little harder than the other despite the physiotherapy we’ve done. It doesn’t make me fearful…instead it makes me smile and feel oh so grateful.
I track his fluids and we go get bloodwork done at the clinic. As I pull into the parking lot I explain,
“We have to do a little pokey and then all done.”
He looks at me with wide eyes and points to his arm.
I smile and nod.
There is no fear as we go inside, take off his jacket and sit down across from the elderly couple. I’ve never seen another child here.
He is a calm and adorable as we take our place and the nurse holds his arm.
After a few tears he is happy again and proudly carries his stickers outside.
Today I am not scared.
I am not angry.
I am not sad.
Did God heal my son?
Yes and no.
He will most likely have a shunt for the rest of his life. He is still developmentally delayed and may suffer from learning disabilities as he grows older due to the trauma in his brain. He has low sodium levels for a reason we are not sure of at the moment but that are moderated with a fluid restriction. We do not yet know if he will need antiseizure medication long term. He is still enrolled in three therapy programs; speech and language therapy, occupational therapy and physiotherapy.
But today I am just grateful.
Because I have my son, and in the last year I have seen my world shift on it’s axis, spin out of control and right itself up inside my Father’s strong grasp.
It’s hard to imagine how life can become more clear, more precious, more meaningful…until it does.
I don’t wish all this away.
I can no longer remember what it was like before.
I know I can’t protect my son…and that brings sweet relief instead of fear.
I know I can’t control my life by doing it all right — my two little boys are a testament to that. One I protected fiercely from the minute I knew of his fragile existence in my womb. He was given every advantage and still a massive tumor grew in his brain.
The other faced adversity and fought for survival from the second he came into being…yet he is happy, healthy and brilliant as he shows my son how to build a tower and “reads” him their favourite story.
Why did my son have to suffer?
I don’t know.
I don’t have all the answers and I cannot argue theologically through the why’s of suffering.
I just know that I have a good, good Father.
He is real,
He is good,
and I am grateful.
I can’t question the God I believe in because it is He who has sustained me, healed me, rescued me, and breathed hope into my terror.
He created a million galaxies in a single breath.
It’s getting light outside now, and my hand cramps on the pen.
I set my notebook on the night table and curl up to wait for the inevitable pit PAT pit PAT of my son’s sleepy, uneven stride across the hall.
It’s May 10th
But I feel peaceful, grateful and humbled by the love of my God.