A Mother's Touch

In another life, I took photos...

Not like now, where it's all about my family, Granite Glen, the animals and me.

I took photos for other people, for other reasons.

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This is one of my very favourite images...

It's of a mother and newborn baby.

A very premature newborn baby.

She weighed less than one kilogram and - along with her twin - was fighting for her little life. Her Mum was a friend of mine, met in another hospital, at another time, with another child, who was also fighting for his life in another way.

The poignancy of this moment hits me right between the eyes every time I see it.

At this moment, she didn't know what the future held for her daughter.

She didn't know she would spend years in and out of hospitals and accompanied by breathing machines for her child, and rarely going out.

She didn't know that her daughter would prove one hell of a fighter.

And that she - and her twin - would win their fight and live.

And turn out to be a beautiful 'normal' little girls.

She didn't know.

She just knew the love of a mother's touch was all she had to give.

And I was lucky enough to be asked to be there, to capture this moment.

More than a bear hug...

We found something tonight.

It was, in Dash's words, his "lucky lucky night". Because not only had we lost (and found) a pony (another post soon). We had also found a long-lost bear.

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He had been stuffed, for some reason, high on a shelf, behind a photo.

It says volumes about my housekeeping that the bear had been lost for over a year.

We had searched high and low. Desperately, then sporadically. Then, eventually, we stopped looking.

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Tonight Dash wanted to get his Buzz Lightyear down, from the same shelf where that toy had been waiting to be fixed for some time, when he gave a squeal. Photo frames came crashing down in a thundering clatter. Dash thought he'd be in strife, and gingerly held a small floppy item as a peace offering as I entered the room.

I looked and squealed in amazement and delight.

A small, raggedy, faded brown bear. He doesn't look particularly special, this tiny stuffed toy.

But he is. Oh boy, he is.

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FLASHBACK TO ANOTHER LIFE, ALMOST SIX YEARS AGO

(A tribute to a stuffed toy, written about 18 months ago)

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It was a day that seemed like any other, when a little brown bear with an orange bow was purchased from the small crowded gift shop of a hospital in Brisbane, Australia.

This was not any hospital - it was a place that specialised in heart surgery, and in one corner of that big hospital was a tiny little man who (although he didn't know it at the time) needed some patches for his heart, and a bear to look over him. His name was Dash and he was just nine weeks old.

Dash's mum and dad didn't realise how important this little brown bear would be to their precious firstborn - he was just one of many bears and toys to find their way to his hospital bed from generous family members and friends who were all desperate to offer help and comfort. Despite surgery, Dash was very ill and had stopped eating and barely slept at all - no-one really knew why and his mum and dad despaired.

Then one day, they were told by a speech pathologist (who had just been to a conference about "tactile" kids): give him a soft toy, it may help him relax and get the sleep he so needs. This little brown bear just happened to be on the shelf the closest to the cot that day, and so he finally lay were he was supposed to - in bed, next to Dash.

It was like some sort of magic happened in that moment - Dash stopped scratching at the sheets in frustration, his fingers clenched onto that little brown bear once, twice, then his whole body relaxed. He slept. Dash's mum and dad watched in wonder and sent some heartfelt thanks to God. It was, to them, a sign something good could happen.

It would be many more months - and four more surgeries - before Dash's health problems were addressed. Each time this little brown bear sat watch over the operations (even the heart doctor knew that The Bear must be on hand to help out in his furry little way), later sitting calmly amongst dozens of drip lines and monitor wires in Intensive Care Units, then snuggling in close to his valiant owner through the rest of the hospital stays.

It gave a strange comfort to this little man’s parents, to know that in the minutes-which-seemed-like-hours they could not be there to touch him; The Bear was providing constant comfort. He was there to look out from behind, when an unfamiliar nurse or doctor began yet another examination. And when words could not offer solace to an uncomprehending ten-month-old after open-heart surgery, the furry touch of The Bear on his cheek could still the fear.

As soon as Dash could talk, “the bear” was christened – “bee-ahh” was among his very first words. The Bear’s very favourite position is tucked tightly under Dash chin, his back to Dash’s throat so busy fingers can easily find his orange ribbon, and twiddle the bow (long-undone and now frayed into a contented fringe).
His other position, when the chips are down, is face-on with Dash chewing frantically on his nose. This uncomfortable role has been stoically endured through the years, happily less often as time went by. As his little owner’s confidence has grown and the scars have faded, the bear was more likely to be found thrust – tail-first – into Dash’s mouth as he hurtled down stairs or clambers into the car for a road-trip.

In the years since he was first handed over in that children’s ward in that heart hospital, Dash’s little brown companion had grown to look a little worse for wear, but his stamina has been inspirational. He never has never flinched despite being vomited on too many times to count, recovering after each wash and tumble dry (Dash could never wait for a line dried bear!). The Bear has never held it against Dash’s parents when they referred to him as “smelly bear” during times their son was unable to part with him soon enough for such a bath, and took his name in vain during regular panicked searches for his increasingly threadbare frame. He even bravely endured his own surgeries, having his nose re-embroidered twice after a nervous little boy chewed too lovingly on it.

Many tried to find a replacement/stand-in for The Bear - to ease the panic and save the hours spent searching, each time this family is sure this little brown friend has been lost for the final time... but even a new identical bear, made by the same company, cannot replace the slightly ragged original. Dash might consider the offering carefully and even hug him for the benefit of the giver, then immediately demand to know the whereabouts of the 'real thing.
Dash’s parents have often looked on as well-meaning relatives and friends rolled their eyes and suggested it wouldn’t matter if The Bear was lost for good – hinting that searching for hours on end for a ratty stuffed toy was not time well-spent.

But this couple know for certain that this bear will always hold a very special place in their little family. They are not normally sentimental people, but when he is no longer needed in Dash’s bed, The Bear will be put on a special shelf in whatever home they might live, and one day, they will tell Dash just what this funny furry fellow did for him (and them) so many years ago.

They often think of the bear-makers who put this little furry piece of wonderful together. They give thanks and share stories of The Bear with the friends who gave this tiny toy to their son, who understood his need to hold and hug, after witnessing their own daughter undergo a heart transplant. They are grateful to the doctors and nurses who were patient and kind and allowed The Bear to be nearby to comfort their son (and his worried, overwrought parents).

Three-and-a-half years ago, none of these people could have really known just how important one single stuffed toy would be to this little boy with an aching heart.

But the equation was really very simple…

One little brown bear = one happy Dash.

end of FLASHBACK!

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And despite being gone for more than a year, nothing has really changed.

TONIGHT WE FOUND DASH'S BEAR... HIP HIP HOORAY!

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PS Man, I wish I'd read this many months ago - because we HAD put the Bear somewhere safe, high on a shelf. I have no idea why... I need to go now. To check on a boy with a bear. Both sleeping peacefully. Together again...

Our King of Hearts - Part Two (The Big One)

If you have just joined me, this post will seem a bit, well random. You need to read here first. If you want some colourful photos, check out almost every other post I have. This one is black and white, baby. (Colour is back soon!)

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Dash's weight gradually climbed. He still slept like a bird and woke at the slightest noise. You couldn't brush your teeth in the bathroom next to his room without disturbing him. Seriously. But he grew. Indeed, with his hidden feeding tube, and a pram strategically set up with his feeding pump, we went out and he looked positively looked plump and normal. I had to physically remove old ladies from peering at him at point-blank range in admiration as we traverses the shopping centre. They meant well I know, but we could not afford germs or colds or infections. I was the ultimate protective lioness mother.

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When he was nine months of age, we returned to the hospital for a catheter procedure (where a tiny tube with camera in place is inserted into a groin artery and threaded up into the heart). It showed Dash had grown enough to make his PA band tight. This in turn signalled the time for his cardiac repairs - repairs that now included fixing newly discovered holes in the top half of his heart (ASDs). It was a matter of waiting until the surgeons had an appropriate opening in their schedules for him. Every day was like a month. Each time the phone rang, I held my breath.

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We finally got the call when Dash was 10 months old - I was driving out of the carpark of a shopping centre. You know how you remember where you were when Princess Di died? Well, I have the same clarity of the moment etched in my memory for this phone call. As I approached those traffic lights, my world stood still. Suddenly the day we had anticipated (and dreaded) for 8 months was here.

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We had just two days to prepare ourselves, make the frenzied phone calls to gather family support, and do the special little things we felt important. We visited a pet shop with a wall full of aquariums - Dash had really responded well to the two goldfish (called Wallace and Grommet) in the Children's Ward at the heart hospital and he barely blinked with wonder at seeing hundreds of fish as we slowly wheeled him through the shop.

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Many photos were taken in these two days - we didn't ever let ourselves think we would lose him, but I somehow needed as much evidence as I could gather of his very special place in our lives.

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We handed our gorgeous little man over to Dr P with mixed feelings - both confidence in staff and terror at the possibilities battled for supremacy. I cannot really recall the hours that followed - we were in some sort of limbo, wondering, praying, not wanting to go too far from the featureless waiting room in case our call came.

Five hours later, we stood beside his ICU cot watching every monitor like hawks and stroking his still little hands. Dash's first surgery had prepared us a little - the stapled wound, the million tubes, the monitors, the stillness, the waiting and the watching. Nothing makes that particular vigil any easier, although Nurse Vince was fabulous and very patient with our endless questions.

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Each step was cautiously celebrated - the extubation, each line out, the weaning off drugs. To our relief Dash improved quickly and was back in the High Dependency Unit within 24 hours.
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Despite an initial fever, Dash made it home in a week - incredible really considering the seriousness of his surgery. And while Dr P warned that our son still had some residual holes, it as if someone had turned a light on in him. Within days, he was eating almost normally - hungry and letting us know about it! For many months, and even now, five years later, just seeing him demand food brings (happy) tears to my eyes. All the projectile vomiting, the gray pallor, the lack of energy and indifferent attitude were soon bad memories. We would pinch ourselves to make sure our "normal" mealtimes were real and not fantasy.

Watching him play with Coz, our patient, loving, gentle Dane would bring endless hours of delight. Watching him take his first ride on a horse, his first fall off a bike.

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While Dash's heart condition taught us to never assume everything is OK or under our total control, we get a huge kick out of every little milestone he achieves. For many months, just visiting the shops (without the added baggage of pumps and tubes) was sheer joy. Seeing people admire our little man's fat cheeks - oblivious to his "big zipper" scar hidden under his shirt – made our hearts swell with pride. Little did they know just how hard earned those rosy cheeks had been!

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Our gratitude to our support crew and the medical staff who cared for Dash is enormous. Our little hero was been given his chance and we have done our best to make sure he follows Dr P's message, succinctly scrawled on the scruffy signature bear: "Go for your life".

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We met many friends during our heart odyssey - parents who have been thrown much worse challenges, and faced heart-breaking decisions, little ones who have put us all to shame with their amazing ability to forge through the pain and get stuck back into life with gusto. Some parents have lost their little champions; others faced up to 14 surgeries with little hope of success, to come out victorious - weary but finally sleeping easier. All seem to share the most amazing strength, even through the tears (both happy, sad and those of sheer frustration).

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While some friends were amazed at our "strength" through his heart hurdles, we know that it was teamwork that won the day. And his strength. He was sick; we had to hang in there until our 'team' got him better and hope that his stoic little personality would shine through.

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I firmly believe that we (as parents) are forced sometimes to dig deep and find that extra something that gets us through, a something that makes us seem "incredible" to someone else looking in from the outside. I think everyone has this something extra, but only circumstances that none of us would choose force us to actually use it.

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I know we will never forget what has happened - some slowly fading scars criss-crossing our son's chest and abdomen will forever remind us. He might need more antibiotics than "normal" kids, to make sure the threat of endocarditis (infection in the heart) does not knock us back down again. But we have made a promise to let Dash live his life - to play, to fall over, to yell, to skin his knees and be a 'normal' little boy.

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I admit a little part of this biased mum's heart believes these heart kids are meant for something great. It is true that they are already great in the eyes of their parents - and those who have watched them climb their heart hurdles like champions. We will all watch you Dash, make your way in this world, with a little extra pride in our hearts.

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And so Dash, you should know now, why your mum loves just watching you sleep at night. Peacefully. Because you can. And because I can.

HEART FACT: 1 child in every 100 born, has a heart defect of some kind. This means, in your life, you will know a family who has a heart child. Maybe more. Tell them they are not alone.

Our King of Hearts – Part One

I am changing the pace a bit today - so if you are hoping for something about crazy-looking wildlife click here, or if photos of some old stuff rocks your boat then click here. If you are ready for a serious immersion into the murky depths of our introduction to parenthood (where we found ourselves on the rocky cross-country track, as opposed to the smooth bitumen highway we anticipated) then put the kettle on and settle in.

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This is the story of our firstborn son. I don’t share it to elicit any particular emotion from you, my brave reader. Those who have were with me through it should go and think happy thoughts elsewhere - no need to go through it again. If you are sticking with me, though I thank you for taking time from your day to share it. You will know someone who needs to read it one day. You'll see why at the end of this tale.

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I post it here for him. Our King of Hearts. So one day, down the track, he understands his beginning, and how very special and amazing he is in our lives. And so he understands why his Mum smothers him from time to time with increasingly unwanted kisses.

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I was a 35 year-old "career chick" who had never really focused on having children. I was so busy living. I was a photojournalist for a newspaper living in a seaside metropolis, I went to the gym, went to clubs and lived large. I loved my very self-centred little world. And then I met my SSB. And after a while it seemed natural, to think about it. Having Children. And then we Got Serious. And then Married. And suddenly having a baby was a very real decision – and together we chose to bring a child into our lives.

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It was clear and very much planned. I took vitamins, we had scans, and then tests and been assured and reassured that all was good with our little miracle. I read books (like Up the Duff which was fabulous and informative and made motherhood all seem like a big laugh) and websites on childbirth and newborns. I thought I was pretty well informed about the path that lay ahead of us.

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On April 16, 2002, he was born happy and (apparently) healthy. SSB and I were delighted at his smooth arrival, we marveled at his perfect little hands with their inordinately long fingers, and ruddy little face. We wondered if his gingery hair would go blond or dark. We barely thought about the few hours humidcrib care he needed after his birth. Too soon we were home and hanging on for the rollercoaster of expected challenges that parenthood brings.

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It was only a few weeks after our nine-pound bouncing babe arrived that things started to go awry. We noticed how much he sweated, especially when feeding. How his suckle seemed to fade more quickly during increasingly frequent feeds. How he simply would not settle for any real length of time. In a bid to improve my mothering skills (which I assumed must be suspect) I visited the local community health centre for a day stay. Nurses there were wonderful but even they battled to settle my unhappy bub, and soon assured me the problem was not my skills. Reflux (which Dash had previously been diagnosed with) was assumed to be the culprit and we were directed to consult our paediatrician for better medications.

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I usually phoned but for some reason I decided to make this visit in person. Usually a cheeky, jovial sort, Dr Bruce was more serious this visit, and made notes of some symptoms - especially Dash's strange sharp breathing. We were bundled off to have a chest x-ray ("as a precaution") and then went on home, mildly concerned but not alarmed. A message on our answering machine from Dr Bruce urged us to head to the Prince Charles Hospital (just a couple of suburbs away) - we raised our eyebrows, but still we thought "just precautionary". (SSB's brother is an well-known medical specialist and we imagined Dr Bruce was being a bit overzealous in his duty of care.)

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Paediatric cardiologist Dr Rob met us at the hospital's Children's Ward ... we chatted initially and then fell silent as we watched him examine our healthy-looking baby. He spent what seemed like an age silently huddled over the echo machine, watching blurry images of our little man's heart and bloodflow. It was now that those first icicles of fear began. We stood rooted to the spot, disbelieving and shell-shocked as he described the situation: our baby had an uncertain number of holes in the heart. I don't think we really heard anything beyond "Your son is in Heart Failure...".

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To me (back then) these words almost hung like a guillotine over our helpless baby - heart failure. Horrible, unknown, threatening - very definitely not good. Later I would understand more, and fear (slightly) less but on that first night there, in the Children's Ward, was no room for anything else in our heads.

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The bizarre thing was that I had been a regular visitor here during my pregnancy – a childhood friend’s oldest daughter had had a heart transplant just a few months earlier. It was an enormous event and she had seemed so very sick, and to a childless career chick expecting her first baby, it seemed like such an incredible rare thing. Then, I had looked around the ward and at the babies and children with their monitors and “big zipper” scars down their chests, and felt great sympathy but a remoteness from their ordeal. To have a child with heart problems. Poor things...

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Now, by some bizarre twist of fate, we were inside their world and the view was much, much more terrifying. The next 10 days of our life was spent inside this ward, inside this hospital. In this time our learning curve was sharp and often shocking. Doctors would discover our little man had multiple VSD's (Ventricular Septal Defects - including many "Swiss cheese" holes at the base of the ventricle muscle) and he would undergo his first heart surgery.

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Our surgeon, Dr P, planned to perform what is known as a "closed heart" operation. This meant that while they were working very near his heart, our son would not need to be on bypass machine. This was supposed to be a reassuring thing… right. Somehow heart surgery of any kind on a child is enough to tear a parent’s lungs out through their nostrils. Or something equally painful. And hard to explain. I can't begin to describe it without being back there. Gut-wrenching and helpless.

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Our nine-week-old precious boy was wheeled in and we held his hand while gas was administered to ease him into the anaesthetic. And while we waited in the awful tiny room for distraught parents, Dr P inserted a pulmonary artery band to stem the flow of excess blood to his little lungs; a move designed to buy him some "growing time" before open-heart surgery (sometime down the track) could repair the defects.

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Ever felt like you haven't breathed in about 5 days? That was me. Even when they said he was OK, and we could see him in the ICU, the breath-holding continued. Seeing him wired up to about 5 machines, I was almost scared to touch him - he was so still and tiny. SSB was strong and silent and also terrified. We didn't know the rules of this fight, we were learning along the way and were surrounded by the strong, weary faces of parents who had seen it all before, and knew they would see it again soon. And the patient, often-weary experts who tried to lead us through the battleground, and the brave, concerned-but-trying-to-be positive faces of our family and friends. SSB and I weathered each day, each drama, knowing we had each other in this battle and we clung to that.

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We were given the all-clear to go home seven days after his surgery. We had numerous medications to help our little man - with his new chest scars - deal with his heart failure. We battled to get our heads and emotions around the challenges set for us, as our families sought to find the elusive words and actions to soothe us and encourage us. We packed up and went home and tried to take up the mantle of new parents as if nothing had happened - as if the past 10 days had not happened.
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Unfortunately our little hero went deeper into heart failure as he struggled to grow into the little band around his artery, and he soon lost all interest in feeding. He stopped suckling at all. We reluctantly returned to hospital and began tube feeding - where a nasogastric tube passing down one nostril and into his stomach allowing us to "feed" milk directly. It was a regime that would become a constant part of our lives for the next 8 months.
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Desperate to keep Dash on breastmilk, I would struggle on for a few more weeks - trying to express breast milk to put down his tube. Every four hours I would start my routine - set up, express, bag the milk, clean up, set up his tubes, slowly feed it to him, clean the tubes (often changing him and sheets after another bout of projectile vomiting) and then try to get sleep for the hour and a half I had before it would start again. In the end I admitted defeat. I chose sanity over mother's milk. It was a tough call.

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It's important to note that we did smile occasionally in this period - like when my wonderful hairdresser (another bush girl) would bring her kit and come into my home and cut my hair for me. I barely got out and it was a highlight to have Pam chatting brightly and making me look a little presentable. I was on the verge of serious depression and those around me knew it. Pam chose to help in a positive way, and to this day I think of her with huge gratitude.

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Other friends walked our beloved Great Dane, Coz, for us. Another mum - a friend whom I hadn't known for long, simply brought her daughter to play with our little man, ignoring the plaster and tubes, allowing us to be normal. To me it was pure gold. My motto became: Just look up, don't look down.

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During this time we were lucky to discover good support (and a pump). I was not alone - and I had a little help from an inanimate object that would offer me a glimpe of normality. I have endless respect for anyone who can tube feed a wriggling baby with open syringes for any length of time! That pump saved my sanity - I simply didn't have enough hands to feed and settle a very unhappy and constantly vomiting Dash on my own.

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Tube feeding was not covered in Up The Duff. Or on any website I subscribed to. And I won't pretend. I struggled. I felt completely unequipped for this. I wanted to rewind, and give birth, and breastfeed and be able to settle my happy, healthy baby. But this was our little man here, our beautiful brave little man, valiantly battling just to eat and grow. And our job was to help him. My job was to help him grow so we could allow the doctors to fix him, and to love him. And God knows I loved him more than life. So everything became about today, about those scales, about growing him. Just look up, don't look down.

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Dash battled and vomited like crazy (after several bad experiences with nasogastric tubes) and after much consultation with specialists we eventually resorted to additional surgery to insert a Peg tube (feeding directly into through his stomach wall). It was an awful decision to make, but proved a good one for our pallid little bub. The vomiting slowed and he (ever so gradually) began to show interest in taking milk and solids orally.

But our biggest hurdle was ahead of us. The "real repair". And I would find out what I was really made of...

Next post: Our King of Hearts - Part Two (The Big One)