It can happen suddenly, literally in a tiny heartbeat. Or it can happen gradually, with months of advanced warning. Every story I have ever read or heard about the journey of prematurity starts differently. Perhaps journey is too passive a word, and in reality it is more like an expedition – one in which you need plenty of resources and several sherpas to complete. While the expeditions all start, and often end, differently; while the outcomes and follow ups vary invariably; there are startling similarities to each preemie path.
The first phase of the expedition is the hospital stay. It starts with the tiniest of cries in a delivery room and ends with a much anticipated arrival to the family home. Like setting off on a trek to Mount Everest, preparing for the stormiest weather, and hopefully – God willing – making it to base camp.
In hospital, time becomes malleable. Minutes drag by, but days rush past. Sometimes, these days are endured rather than treasured. At a time when you are meant to be creating a reservoir of nostalgic moments you are struggling to find the positive in any of them. It is difficult to marvel at the satisfied contented breath of your newborn baby when they audibly struggle for breath. When they labour for the simplest of human processes which we all take so much for granted. Einstein, (himself a preemie), once remarked;
“Put your hand on a hot stove for a minute, and it seems like an hour. Sit with a pretty girl for an hour, and it seems like a minute. That’s relativity.”
A long awaited cuddle with your baby may last an hour but feel like barely a second, but the minute it takes for a highly skilled neonatologist to deliver bad news may feel like an eternity,
At some point, you will feel like your expedition is not turning out as it is supposed to. But you will cope. Your head will be down, your bum will be up. People will marvel about how strong you are but you will feel weakened with vulnerability. You are both wrong – you are not choosing to be strong, but you must be all the same.
Life will blur around you in your cocoon, and the intensity of it all may well overwhelm you. You’ll feel yourself lurch from extreme to extreme, from certainty to fear, from hope to despair. You will oscillate between having no time to think, (which will be overwhelming), and too much time to think, (which you will spend trying to ignore the nagging fear that your tiny pugilist will lose the fight. Or worse, that her mother will lose hope and fail her.)
But you will reach base camp. You will be exhausted, and perhaps a little numbed by the enormity of the task, but there will come a day for most preemie parents when you will bring your little bundle home.
Your expedition will start afresh and you will probably feel the same resigned sense of fear, the same dread of the unknown that has come to be your passenger. You’ve waited for this time to come – envisaged it every time you needed to draw strength and yet it is not exactly as you planned. You were hoping for the quiet calm of early motherhood. The sleepy cuddles, the moments of pure serenity. You hadn’t bargained on specialists and weigh-ins and ongoing tests. Gradually you will realise you have missed that trail and veered to the side. That your expedition will differ wildly from most other parents. That you’ll never get those moments back.
So you will take the small wins, and worry about the big things. The milestones will look like mountains from the bottom and giant precipices from the top. Despite the indescribable joy you experience as you get to each peak, you’ll still be a little bit terrified that you’re about to fall.
Your expedition will continue, and new sherpas will be needed to help carry the load. You’ll realise piece by piece that this is reality. That without your noticing, her life has begun. The doctor’s appointments will wane, but you’ll need support of a different kind to deal with the baggage you need to offload. You’ll suddenly have more time to think about what you have experienced. You’ll start appreciating moments and creating your future nostalgia, because even though your expedition is different from what you thought it could be, it is your trek to take and instinctively, you know it will lead you somewhere beautiful. And slowly, second by second, it will dawn on you that she is not a preemie anymore.
As you approach the next peak you’ll gain more perspective. You’ll know now that what you experienced was traumatic, though at the time it was just a series of events you did your best to cope with. People will still shake their heads and say “I don’t know how you did that.” And you won’t have an answer, because you don’t either.
You’ll start to process the past as you look to the future. You’ll understand that it changed you all. It will hurt looking back, but you’ll be proud of your little journeymen, and grateful, so grateful for the sherpas along the way. Maybe you’ll feel a bit of survivor’s guilt, and worry about what lies ahead. But you will begin to thrive instead of just coping.
I suppose at some point you will reach the top of your Everest – I can’t say for sure as I don’t think I’ve seen it yet. But I know that the view along the way is beautiful and so memorable, if at times the trail seems frought with insurmountable obstacles. And one day, from the peak, you will look down on the path of your expedition and realise just how immeasurably exquisite it was. That your experience is your own and that none can match it. That you took your own trail and conquered your Everest. I imagine, from up there, the view will be spectacular.