Wear Red for Valentines

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Happy Valentines Day.

A day for all things red and heart-shaped. A day for celebrating the mystery of love in all its shapes and forms. A day for flowers and chocolates, hugs and kisses, and walks down memory lane.

Hearts are amazing things. They flip at the sight of the beloved. They pour out in times of hardship and suffering. They race like crazy at the top of the hill. And in the busyness of our daily lives, our heart sits in the background, beating, pumping blood around our bodies, keeping us breathing, active, living. We don’t even need to think about it. It just keeps on working. Until one day it doesn’t.

Wear Red Day

Today is also Wear Red Day. It’s a day for remembering those who have died from heart disease and those who devote their lives to research, such as Heart Research Australia.  Wear Red Day is a cause that is close to our hearts. Sadly, we are intimately acquainted with heart disease.

When Dan and Bec were very young, only 6 and 4 years old, their Dad, Rob, died suddenly of a heart attack. One evening Bec said goodnight to her Dad and it was the last time she saw him alive. The next morning, Rob got up early to go swimming. He never came home. He was 39.

Having a desk job, Rob was concerned about his health and fitness, so had started swimming a few laps early in the morning at the local pool. While he was at the pool, he experienced pains in his chest and took himself up to the hospital. When the hospital called me, they reassured me that he looked fine and to just come when I could. There was no hurry.

It was Dan’s first week at school. After doing the morning routine, dropping Dan off at school and Bec off at a friend’s house, I went up to the hospital. Rob was sitting up, talking to the nurses and we chatted. They were waiting on some further results and then the doctor was going to discuss whether further treatment or lifestyle changes would be required. We never got that far.

I sat…waiting, wondering, praying

One minute Rob was fine. The next minute he had a fatal heart attack. It happened right in front of my eyes. At the time, I don’t think I quite understood what was happening which was probably a blessing in disguise. It was only much later that I realised I had watched him die. The nurse called for assistance, medical staff rushed in and I was ushered out of the room. I sat by myself in the waiting room. Waiting. Wondering. Praying.

Finally the doctor comes out and says he is sorry. There was nothing they could do. They were unable to revive Rob.

What happened next is somewhat blurred. I know that friends immediately dropped everything to be by my side. I know that my family, who all lived interstate, dropped everything to travel to QLD. I know that during that day I made numerous calls to people to tell them what had happened. And at some point I had to tell my four year old daughter that her Daddy wasn’t coming home.

We didn’t know that Rob had a heart condition.  There was a blockage in one of the arteries. Tests had shown that he had had a mild heart attack. Even the doctors admitted that Rob did not look like a man who was about to have a fatal heart attack. There is no blame to be cast. He was in the right place at the right time. If only we had known.

It turned our lives upside down

I lost my partner, my best friend, my soul mate. Dan and Bec lost their Dad. Family members lost a son, a brother, an uncle. I don’t know what Dan remembers or feels about it. He can’t tell me but he still recognises Rob’s photo and calls him Dad.

For Bec, it has been devastating. People who knew Rob, say Bec looks so much like him. And she does. She is like him in so many ways, even in ways she could never have possibly known. Bec is Rob all over again. And so her loss runs deep.

It is a lifelong loss and despite what people may say, it does not get better with time. Special days come and go – Christmas, Father’s Day, Birthdays, Anniversaries, Graduations – they are always bittersweet because he is not here. 

Hearts do heal but they are never the same. Our hearts are scarred with the pain of loss and grief. Life does go on, but we carry our loss with us wherever we go. And every year, when that day comes around again, we feel it in our bodies and in our souls. Even before we are conscious of the approaching date,  we feel it  – the heavy heart, the sadness, and then we remember – that day is here again.

Every time I hear a story of a sudden death of a loving partner and father, no matter the cause, I remember, and it causes a pang in my heart for the family left behind. We know the road that lies ahead. We were not the first and we won’t be the last. Not even the last in our own family.

Only a few months ago, Rob’s older brother, James, passed away suddenly. In circumstances eerily similar to that of Rob’s, a different heart condition, but still, it felt like a case of deja vu. For friends and family gathering at another funeral, the words “we’ve been here before” rang an all too familiar refrain.

 

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So today, wear red. Wear a red shirt. Wear a red hat. Wear red shoes.

If you have lost someone to heart disease – wear red.

If you know someone living with heart disease – wear red.

For all the people in your life who you love dearly – wear red.

Wear red to keep hearts beating. 

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A Sticker for the Ow

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One of the challenges of Dan’s autism is his high pain threshold. We often don’t know that something is wrong until it is very wrong. Recently Dan went to bed one evening  perfectly fine, but the next morning he could barely hobble to the kitchen table to have breakfast.

What’s wrong? Why are you limping?

Ow.

Show me Ow.

Dan rubbed his left thigh and sure enough, there seemed to be a red mark, although he is unable to tell us how it happened. Without witnessing an accident or injury, we often never know how the bruises come about. But we do know that when Dan says “Ow”, it means it really hurts.

Autism and a high pain threshold often go hand in hand. In his book, The Complete Guide to Asperger’s Syndrome, Tony Attwood notes that people on the spectrum often do not “show distress in response to levels of pain that others would consider unbearable” and this can often result “in frequent trips to the local casualty department.”

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Yes, hospital emergency departments are something we have had experience with over the years, for both detected and undetected injuries and illnesses. Dan has a tendency for hitting his head and has the scars to prove it. It’s amazing how much blood can pour out of a body part that appears quite bony, but at least this kind of injury doesn’t go unnoticed.

Dan received his first scar at the age of two, just prior to the birth of his sister, Bec. We were shopping for a new single bed for Dan and as we wandered around the furniture store, he tripped over a rug, flew through the air and collided with a bed. Needless to say, we didn’t buy that one. A few years later, Dan was kneeling on a chair at the kitchen table, when…bang! His chin hit the table. Blood streamed down his chest. Off to the hospital again and another scar.

The most recent emergency trip was just a few years ago. Dan was riding his bike around our property and ran smack into the loader. Dan had his hat on, so the brim hid the bottom edge of the loader bucket and, as Dan prefers to look at his shadow while he is riding, he probably wasn’t looking where he was going either. At least this time he let the nurse put in a few stitches. That was a first.

Infections though, are a different story. Tony Attwood highlights how ear infections and tooth aches can often go undetected until they’ve reached a very serious level. Dan had a lot of ear infections when he was young, but he never complained and rarely cried, so it wasn’t until we noticed him pulling on his ear that we knew something was wrong. It was often quite difficult trying to make medical staff understand the reality of life with a non-verbal child who has a high pain threshold.

 

Our most recent injury started with the limp, but then it got worse. Apart from the limp, Dan seemed okay. Then we noticed he looked a little pale. And before we knew it, up came his breakfast. Great – a tummy wog. At least this time I managed to get him to direct it into a bucket – that is a first and a really big step forward for Dan. Usually he just gets so distressed, well, it just goes everywhere. But we weren’t done yet.

While he was taking it easy, a small pile of books fell onto Dan’s foot. Ow! And it was the same foot that was already limping. It was only later that I discovered he had a sore toe as well.

What’s this? When did this happen?

Ow.

Yes, I can see it is ow.

This is where the sticker comes in. Sticker is Dan’s word for bandaid. Bandaids are wonderful inventions. They can miraculously heal any sore spot. So, while I’m putting the sticker on….what’s this under your foot? Tinea? What next? After a visit to the doctor and the podiatrist, I spent the next week playing tug of war with a sore foot as I vainly attempted to inspect sore spots and apply cream and stickers. Thankfully, the tummy is now settled, the limp has disappeared and we are down to just one sticker on the foot.

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Vigilance is really important if you have a non-verbal autistic child with a high pain threshold. It is so easy to miss something because your child is happy, active and continuously singing. But then again, perhaps vigilance is important for people without a high pain threshold too. We all need someone who can look beyond the “everything is okay” facade and ask the question: are you okay? And sometimes we need to be truthful and say “Ow”. Being vigilant and looking out for each other means we can all live happier and healthier lives.

 

Attwood, Tony 2008 The Complete Guide to Asperger’s Syndrome, Jessica Kinglsey Publishers:London, pp 288-289.