The World Can Hurt Me In Many More Ways.
In Tolstoy’s “Anna Karenina”, the character Constantine had this to say when his wife gave birth and made them parents for the first time:
“Now the world has so many ways to hurt me.”
Though no parent would ever say this aloud, I believe every parent knows only too well this unspeakable truth, the unbearable hurts. Like Superman when faced with kryptonite.
I know this truth all too well.
When Breath Becomes Air…Or Not
When Caleb was a baby, one of his troubling traits was holding his breath after prolonged bouts of crying. The first time he cried til he momentarily stopped breathing and his face turned blue, our hearts felt like they had momentarily stopped too!
It soon became a recurring pattern. Each time he did that, he would go into a paralysing seizure as his body stiffened and his breath halted. Then he would recover and slump with exhaustion into our arms.
What’s going on with this baby we asked?!
Thankfully each time it happened, he would resumed breathing after just a few seconds. But those seconds felt like an eternity for my wife and I.
By the time he was four or five months old, his breath-holding stunt had become his ‘trademark’. Though the doctors assured us it wasn’t unusual for a kid they suspected had acid reflux, it’s still hard each time it happened. We had to pray again and again that he would be fine.
But everything came to a head one warm June evening in 2011 when he was just five months old.
My ‘Kryptonite’ Moment
It was a Saturday evening, and we were having dinner at MacDonald’s in a mall downtown. It was supposed to be a relaxed and enjoyable weekend outing. We never imagined what that evening would become, but we were about to find out.
Caleb wasn’t crying incessantly like before, so we had no prior warning when he held his breath in the stroller where we placed him.
Maybe it was the silence emanating from the stroller that tugged invisibly but relentlessly. Or maybe it was a prompting from on high.
Either way, I was just glad that my wife decided to take a closer look into the stroller as we left Macs that evening. That closer look was to be the first time we both discovered what it felt like when the world stood still.
Caleb looked pale and blue, and his eyeballs were rolled up. And he was still.
Right there and then, if there was any other more gut-wrenching terror of a moment for a parent I wouldn’t know it.
What followed was a whirlwind, as my wife and I took turns to hold and revive him, in between calling out for help from the shoppers milling around us. Meanwhile, my eldest son Jaedon stood close by and rooted to the ground, his two-year-old mind unable to comprehend what was happening.
He wasn’t alone.
As we sought help, I struggled to recall the emergency number for the ambulance, but failed miserably. My mind was a vacuum, my face a frozen fossil, and my chest a messy coil of tightly wound-up cables.
After all these years, I can still feel the shock and horror as I held my son in my arms that moment, while he looked as lifeless as a soft toy one wins at a carnival game.
Several kind shoppers quickly helped us call 995 and an ambulance miraculously appeared after a brief interval. While my wife went with Caleb in the ambulance to the children’s hospital, Jaedon and I followed in the family car.
The ride took approximately 20 to 30 minutes, but the whole time I just felt unhinged and petrified as I drove. The presence of Jaedon was probably all that kept me from driving like a mad man in the busy downtown traffic, risking life and limb.
Four Nail-biting Days
What followed upon arrival at the hospital were four full days of hospitalisation and a battery of tests to ascertain what happened to Caleb. It’s hard to put into words the nerve-wrecking moments that made up those days, and the constant tears our threadbare and frayed nerves triggered.
Watching your baby hooked up daily to all manner of tubes and needles is enough to drive any parent to distraction, and I was no exception. On the second or third evening, the medical team decided they had to conduct yet another test that involved extracting cerebrospinal fluid from Caleb (they called it a spinal tap or lumbar puncture). It was to ascertain if he had any infection in his brain.
I almost went berserk.
As I stood peering with bloodshot eyes through a sliver of a window outside the operating theatre, the sense of helplessness was so crippling I could barely stand. To see my baby in such a state, and yet be paralysed and unable to intervene and help spare him the pain… it had to be one of the most awful feelings in the world.
While I couldn’t know what that lumbar puncture felt like for him, I knew what a ‘cardiac puncture’ must feel for me as I watched them insert the syringe into his spine. My heart felt like an over-inflated balloon that was about to burst because someone had just stabbed it with a chisel!
Enough Is Enough. Really.
After four days and a barrage of tests, there was still no clue as to why Caleb had that episode. The doctors could only say that as the results so far showed nothing, the last thing was to perform an MRI to see if there was any abnormality in his brain. We hesitated, unwilling to put our boy through yet another round of tests, and ourselves through another bout of spirit-crushing terror.
After careful consultation with the specialists, we decided enough was enough. Since he appeared to be fine and unaware of what happened, we decided he was better off returning home.
I know there will be those who wonder if it was the right decision. We’ll never know, and there are nights when I still wake up, wondering if this was in any way connected to his ASD.
But he was only five months old then. And the thought of another needle, another catheter, another ‘tap’…
It’s OK Not To Be OK
One good thing did emerge from those four hellish days in the hospital: the above picture.
Taken on the second or third day he was there, it captured the joie de vivre that you would expect from any happy, normal five month old, not a patient stuck in a hospital for reasons no one but God knows .
So each time the memories of what happened takes hold of me, this picture would always emerge. A cooling balm. A cold drink. A counter-point.
I know we might not have been “OK” when we stopped short of completing his litany of tests back then.
I know Caleb isn’t “OK” because of his eventual ASD diagnosis years later.
I know our family won’t always be seen as “OK” by the rest of the non-ASD world.
But as a family, we’ve decided that it’s OK not to be “OK”.
When being a parent means that the world now has more ways to hurt me, it’s really OK to let go of some things, so we as a family can move on to new challenges, and face new hurts.
To move on to what truly matters.
Living. Breathing. Everyday. Together.