The dark, fast shadow

I wrote this a couple of months ago for the Band Back Together group site, which if you haven't found it yet is a great place to visit to find stories of others overcoming challenges in life.

I re-read it and felt quite proud, so I wanted to include it here, because it's part of Sophie's story.

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There are some moments in life you know you’ll never forget.

We’ve just returned from a holiday at a beach where I used to stay with my family two decades ago, and as we walked back to our hotel room from a long walk on the sand, one of those moments came back to me.

It was a bright Australian summer day, and ten-year-old me was bobbing in the blue-green sea with a friend, enjoying the coolness of the water on my skin compared to the burning beach sand we’d left behind just a few metres away. There we were, weightless, being washed side to side by the rolling waves, not a care in our minds, when a dark, fast shadow swept through the water in front of us.

It might have been a trick of the light, or a lone cloud slipping briefly across the sun overhead. Or it might have been just what we thought it was, and we might have been lucky to swim back to shore that day.

Even without knowing whether that shadow was a big threat, a small threat, or nothing at all, the sight of it still sent a shot of terror through me that I’ve never forgotten. I’ll remember that moment- the smell of the sea, the way I had to squint my eyes against the brightness of the sun bouncing off the dunes, the feel of water wrapped thickly around my legs- as long as I live.

I can say the same for the moment the doctors told me that my daughter’s tiny newborn brain had been severely damaged, and that she would more than likely not walk or talk. Not only do I remember every detail of that moment- how cold my husband’s hand was, clutched in mine; the slow, loud tick of the clock on the wall; the brightness of the day outside the NICU window- but I felt the exact same flickering terror.

What happens next?

When my daughter was born in November 2008, my life became a series of those heart-stopping, soul-destroying moments of fear, one after the other. There’s so much I don’t remember about that time, but so much I’ll never forget.

I remember the moment I realised she’d stopped moving inside my stomach, four days overdue. I bent down to pick something up, and instead of the usual baby squirm, there was nothing but a weight like lead, and I knew something was wrong.

I remember the desperate fear of the moment they strapped the monitor to my belly in the hospital. The soaring relief when her little heartbeat appeared, strong at 140 beats per minute. And the crashing terror as we watched it plummet before our eyes to only 80 beats per minute.

I remember the swirling rush of people as they got me ready for the crash c-section. Buffeting around me, pulling off my clothes, thrusting forms into my hands. I remember shaking so hard as I sat on the operating table that I thought I must have looked like a bad actress trying to pull off intense shock. I remember being so clear, calm, rational in my thoughts, even as my body was reacting. I only had one thought. Get her out. Do it, now.

I remember waking up in a dark, silent room. My husband told me she was alive, but she was sick. Very, very sick. She’d become tangled in the umbilical cord before labour even started- it was wrapped six times around her legs- and by the time they got her out that heartbeat was down to zero. She was being airlifted to the children’s hospital for urgent treatment, and they still didn’t know if she’d make it or not. She couldn’t breathe without a ventilator. She was in a coma.

I remember the first time I saw her, through the window of the tiny nursery in our country hospital. The anesthesiologist, who’d been called out of bed for the midnight c-section, was still there at midday the next day, breathing for her. Putting his thumb on and off the end of an oxygen tube at just the right rate, because they didn’t have a ventilator small enough for her. He’d been doing it for ten hours. Breathe in. Breathe out. Ten hours.

I remember them wheeling her past me on her way to the Royal Flying Doctors plane. They brought my bed out into the hall, and I reached in through the hole in the incubator and got to touch her soft little knee for a few seconds before she was gone.

I remember the moment it all became too much, after I was flown to the city to be near her. She’d started having seizures. They were cooling her body to 34 degrees Celsius, using hypothermia to halt the swelling and bleeding that was progressively causing more and more damage to her fragile little brain. Because of the caesarian and the air transfer, the hospital I was staying in (not the same one she was in) decided I had to have anti-coagulant injections in my stomach for three days. They hurt like an absolute bastard. On the second day, I asked the brusque nurse if she could put the injection in my arm instead. She said no. I talked to my best friend, who’s a nurse. She said they should be able to do it somewhere else. The next day I asked if she could put it in my thigh, maybe. My butt. Anywhere but my stomach. She said no. That was it. I went into total meltdown. Bawled my eyes out, shook and cried, let the panic, fear and anxiety flood into me and drown me senseless. Hit rock bottom, and was finally able to start the long swim up toward the surface again.

I remember the next night, when I got to hold her for the first time, and I started to think it was going to be all right, after all. She was still in a coma, still attached to so many wires and tubes- in her hands, feet, belly button- that my husband described her as more like a VCR than a person, but she was alive. She was doing well. There were no more seizures. When I passed her over to my husband for his first cuddle, she opened her tiny, swollen eyelids just a crack and squinted up at him with a look that said she was in there, and she wasn’t giving up.

It got better and better from there. She came off the cooling mat. Off one medication after another. Off oxygen. She started to suck on a bottle, and she had her feeding tube removed. She had a few successful attempts at breastfeeding. She had more and more awake time, and she inspected us all. She pooped herself regularly, with gusto. She howled her little head off when she was hungry, to the point where they nicknamed her “zero to one hundred Sophie,” for her capacity to go from sound asleep to mega-tantrum in under one second. After a week in the hospital, we started to hear that they were planning to send us home. Sweet, sweet relief.

It looked like that shadow was just a cloud passing across the sun after all. A moment of unforgettable terror, but after that, a sunny day at the beach.

Not so. Like so many of life’s shocks, the biggest one was left until we’d been lulled back into a false sense of security.

When the doctor told us the MRI scan of her brain was back, we expected him to tell us it was all clear, because that’s how it looked when we observed her. The very last thing we expected was to be sitting in that stark white office, watching the rest of the world get on with life outside the window, while he told us that there was significant damage to most areas of her brain. He showed us picture after picture. Scatters of white bleeding against the grey folds of the brain in every area that mattered. The frontal lobe, which controls emotion, reasoning, problem solving, personality. The occipital and parietal lobes, responsible for vision. Movement.

He told us it was one of the worst scans he’d seen on a child who survived an initial injury like hers- hypoxic ischemic encephalopathy is what it’s called, meaning damage to the brain caused by lack of oxygen. That on a scale of one to ten, hers would rate a seven.

That this much awaited, much loved first child in the next generation of our family may never walk or talk or even know who we were.

Forty weeks and four days of perfect, trouble-free pregnancy. An ultrasound two days- two days- before the birth, which showed a healthy, happy baby.

And at the last possible moment, a cord accident. Unavoidable, undetectable, irreversible.

We were lucky to have her at all. It was some supernatural mother instinct that made me realise her lack of movement needed attention so promptly. A lot of luck at all stages. We didn’t feel all that lucky. We felt like we’d been torn to pieces and scattered to the four winds. We fell apart.

The fast, dark shadow had turned out to be exactly the great white shark we’d feared, and now we had to face it, front-on.

We pulled ourselves together quickly after that. Because we were lucky to have her, and she still wasn’t giving up. She wasn’t listening to these diagnoses and prognoses. No, she was sucking her way to weight gain, re-routing neural pathways as she slept, and showing that she really is her mother’s daughter with her mulish stubbornness in refusing to give up her supplemental oxygen.

If she wasn’t giving up, we weren’t giving up on her.

Months went past. She grew and thrived. We researched, sought therapies, joined support groups, blogged. She had weakness in her left side, and tightness in her right. She had gross motor delays, communication delays. She never had any problems whatsoever in her personal-social development, being an unusually on-the-ball little person from the day she woke up. We went through assessment after assessment. Moved back to the city from the country to be closer to family and medical resources. If an issue came up, we found a way to deal with it. We researched ways to stimulate her in areas that weren’t problems- with the aid of her Bumbo seat, she was sitting independently at 6 months. Turning pages of a book around the same time, a year early. She crawled at 8 months, and her low/ tight muscle tone disappeared. Walked at 11 months. Said her first word at 12 months, and never looked back from there.

At 22 months of age, she’s now ahead in every developmental area. 2 months ahead in gross and fine motor, 4 months ahead in expressive language, 9 months ahead in receptive language, 6 months ahead in problem solving, and at least a year ahead in personal-social skills. Not one of the original predictions was even close to correct.

We took her back to the neurologist last month for an assessment that ended up lasting just ten minutes. As Sophie snatched her reflex hammer, then her pen, then stood one one foot, then giggled at a joke, the doctor threw her hands in the air and said she didn’t even need to complete the assessment to see what was right in front of her.

“She’s perfect, isn’t she?”

She is. And we are lucky, lucky, lucky. So many others with the same diagnosis don’t get this lucky. We will never, ever take that for granted, because we will always have those moments of terror trapped somewhere inside. The smell of antiseptic hand cream, a too-bright day, a visit to any of the three hospitals we stayed in- any of those things can trigger those memories, and we’re right back there in that moment, hearing the tick of a too-loud clock.

But there’s a difference, now- now that we’re holding hands with a little person who sings, “morning tea, morning tea” as she skips along beside us, because that’s the last pair of words we explained to her that morning. Now that we have a little girl who sees our happy tears and offers a “duddle” to make us feel better.

Now, those memories don’t hurt the same way. They’re just shadows in the water, passing by, and we’re no longer wondering. We know they’re harmless; we know they’re simply clouds across the sun on an otherwise sunny day.

It took long months to get here, and long experience to learn that the advice I hated getting from all and sundry during our time in the NICU was actually true: this too shall pass, and what doesn’t kill you will eventually, finally, after much heartache and pain, make you stronger. In the meantime, you have to weather the hard times as best you can. Feel the fear. Know that it won’t ever leave you completely- but in time, perhaps months, perhaps years, it won’t mean the same thing.

Talk about it. Keep a diary, a journal, a blog. Reach out to others who understand. I’ve had almost twenty emails from people who’ve read Sophie’s blog and need someone to talk to about what’s happening to them and their child. I’ve replied to all of them, and I’ve kept in touch with more than half. There are good outcomes, bad outcomes, and many in the middle, but we all have something in common- we understand what it’s like to see that shadow swim past, and we’ve all felt the fear.

Trust yourself. Trust your child. Work hard, and don’t give up. And one day, perhaps when you least expect it, the dark, fast shadow will be gone, and with it the fear.