It started off as a minor irritant. A prickle, easily brushed aside. But after what felt like the 200th time someone blithely compared my micropremmie to a ‘normal’ baby, that word felt like a festering sore which was never allowed to heal.
Ok, in the scheme of things, it wasn’t the worst thing you could have said to me. That award goes to you who offered condolences for the loss of my son, even while he valiantly fought on in the next room. But I digress.
Why does that word raise my hackles so much? Perhaps it’s because once Etienne was born, we always seemed to be in its endless pursuit.
To the young lady at the stationery store, I’m sure you meant well, but your encouraging comment when my son was already a few months old that he was ‘starting to look like a normal baby’ wasn’t the most sensitive thing to say to someone rampant with post-natal hormones, off-the-chart cortisol levels and an emerging case of the baby blues. But of course, being the consummate polite English girl that I am, I merely smiled and nodded, while inwardly crying for my beautiful, almost-normal boy.
It wasn’t just the inexperience of strangers though. Medics, family members, and well-meaning friends would all use the dreaded ‘n’ word. I assumed people would grow out of it, just as my son grew into his skin, but at age six months adjusted, he’s still being defined in terms of his inclusion or exclusion from that elusive group of babies. And it snaps at my heels. A lot.
But here’s the thing. It’s not you, it’s me.
When you give birth to an extremely premature baby, nothing is normal. From the moment you lie on the surgical table, eyes locked on the sterile curtain that will reveal your son’s fate, to the day you finally leave the hospital with your tiny, fragile baby, still reliant on oxygen cannisters, and already four and a half months old. So we keep hoping for, pursuing that nirvana, normal. Running away from abnormal.
Like so many other micropremmie parents before me, I fell into the trap of thinking that once my son was home, finally, life would be normal. But it’s not. The eternal scramble to make sure Etienne takes every last ml of milk because we’re terrified of losing a single percentile is not normal. Nor is the unrelenting war against germs, meaning we need to avoid crowded places and quarantine him from other children. No mothers groups, no day care, no playing on the swings in the park. The mounting fear when your baby shows the slightest sign of illness. No flights for a few years because of chronic lung disease, so no proud reunion with my family overseas. No baby shower, no first birthday party because it’s bang in the middle of flu season, and no easy answer when a stranger asks how old your child is. It defies every preconception I had of what would constitute normal.
And yet. If this is the very small price for taking our very significant prize home, I’ll gladly pay it again and again, whilst stoutly defending our claim to be the luckiest and happiest little family in the world.
But please, do me a favour, next time you want to talk about how ‘normal’ my son is or isn’t, ask yourself, does normal even really exist – or are we all just different shades of the usual?
In any case, when I think of the litany of hurdles; the swathe of night-time horrors my baby had to overcome to be here today; compared to your average milk-drunk, rosy-cheeked full-term chubby bubby, I must admit Etienne is indeed not normal. When you’re a micropremmie, normal just isn’t enough.
Nope. He’s super-normal.
Watch Etienne’s story here: