~ Fourteen Going On Forty ~

I’ve been running around all week like a flea in a fit. The youngest son has been home from school, suffering from his allergies, and as any parent knows when a child is sick it creates a ton of extra work. Also…he likes to talk. He’s one of those people who once he gets going on a topic that interests him can ramble on and on, making it hard to get away. So each day, he’s lain on the couch, sneezing, talking, and watching anime, surrounded in a cotton cloud of spent tissues, while I’ve tried to get all the usual stuff done as well as look after the patient. These are the times you need to clone yourself.

I suspect the youngest son has an active mind. The other day he said, “Do you know what I’m looking forward to the most about growing up?” A number of things went through my head like leaving school, independence, money, etc. He said, “I’m looking forward to having rational conversations.” I think my jaw hit the floor. Say what? Yes. He said he gets tired of the ridiculous things his friends say and it drives him crazy. I was amazed by that. I hung off every word my friends said when I was his age like a brainless gibbon. I had no such discernment.

Since he was a tiny child the youngest has always been wise for his age. And decisive. While I’m dithering about on a decision, like what to name a new pet, the youngest son will deliver a verdict immediately. As the years went by, I started to rely on his instantaneous decision making because he always seemed to make the right choice. He’s fourteen and to him things are very clear. It’s a quality I envy at times. To me things are very grey never black and white, however, I may have gotten jaded with time.

Over a month ago, he begged me to take him to an information evening about junior space school. The $10,000 price tag for two weeks at Space Camp didn’t faze him. He negotiated with his father and has started working every weekend with him as a builder’s hand. He’s saving the money steadily. “I want to do this more than I’ve wanted to do anything else in my life,” he told me. I believed him and want to support him in fulfilling his dream in every way that I can. The other day, in a questionnaire for school, he said they asked what he wants to be when he grows up. “I wanted to write astronaut but thought it would sound stupid.” “It’s not stupid to have big dreams,” I told him. “Dream as big as you like and anything is possible.”

I admire him because I know how far he’s come. I guess when you’ve faced death on the operating table at the age of five it changes a person. But the youngest son survived his double bypass open heart surgery, without brain damage or the possible side effects of paediatric heart surgery like emotional/developmental/behavioural difficulties. He came through perhaps a little weaker physically than his peers. Otherwise he is no different except for his high level of intelligence and a well of compassion as deep and wide as Lake Taupo. I would say he’s an extraordinary individual. If anyone could grow up to be an astronaut, it’s him.

I tell friends, “he’s fourteen going on forty” as a way of saying he has an old head on young shoulders. I remember we were driving back from his physiotherapy one afternoon, and the boy racer in the car next to us screeched to a halt half a car’s length over the stop lines on the road. The youngest said, “Why do that? He’s just showing off. It’s silly.” I thought if I closed my eyes that could be my father speaking, you’d never think it was coming from someone nearly eligible to be a boy racer himself.

It’s humbling being a parent. As Kahlil Gibran said in his famous book, The Prophet, your children are not yours, they are the arrows and you are the bow that sends them forth into the world. As a parent you want the best for your children. You create them, raise them, guide them, love them and then you let them go. Yet, with my youngest sometimes I’d swear he’s the one raising me.

What about you, do you know a child who seems far older than their years? Or are you the old soul in your family?

Talk to you later.

Keep creating!

Yvette K. Carol

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Your children are not your children. They are the sons and daughters of Life’s longing for itself. ~ Kahlil Gibran

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~ THE IMPORTANCE OF SLEEP ~

If you’re like me, you may have gotten busier over the last few weeks. The chores stack up, things get overgrown. It’s the end of the year, jobs need resolution, deadlines loom and time pressure mounts. The thought of the impending festive season and adding even more items to the “to do” list strikes a note of panic into the heart. For some, the financial issues at this time of the year become overwhelming, and the thought of getting together with the family can be fraught. I have a friend who calls this ‘the suicide season.’ Add the fact that once stress sets in it can reduce the duration and quality of sleep, and you’ve got a disaster walking.

Without sleep, we cannot function properly. With the right amount of quality shuteye, then we get to enjoy the benefits as it helps prevent heart disease and weight problems, and boosts the immune system.

Without sleep, you end up the walking dead, or ‘tired and wired’ as my friend put it when she saw me the other day.

I had been overdoing it in the last month or so working long hours to finish my book. About three weeks ago, I began to get abdominal discomfort which felt almost like a mild hernia or similar. I was having sleep broken by three hours of wakefulness a night.

It’s hard to be gracious when you don’t get enough sleep. I lost all sense of political correctness, courtesy, and I lost my sense of humour. It made me impatient with the kids. This created some inner turmoil and struggle over my feelings around myself as a mother. It gets complicated. However, I have come to know that I absolutely have to have adequate sleep to function as a parent and especially as a creative person.

By the end of this week, I felt a deadly fatigue and yet so hyped internally I was running on pure adrenalin. I couldn’t slow down and felt I was close to burnout.

I went to see a friend yesterday morning who is a healer. We’ve known each other a few years. My friend asked how I was and we talked at length. Then she spoke about the wisdom of slowing down and attending to self care. ‘To nurture our families, we need to take care of ourselves first.’ She advised two meditations of a twenty-minute duration daily, morning and afternoon.

I’d only recently seen an experiment on the BBC show, Trust Me I’m A Doctor, on the benefits of meditation. They tested people before and after several weeks meditating daily. All participants showed improved health and an improvement in a sense of their overall well-being, and they were sleeping better.

It is vital to our health to get enough sleep each night. The nine recognized benefits associated with getting a good night’s sleep are, lower risk of heart disease, lower inflammation, a stronger immune system, better productivity, greater social/emotional intelligence, lower weight gain risk, improved calorie regulation, better athletic performance, preventing depression.

For the last few years, I’ve been starting each day with a ten-minute meditation, and I had thought that was enough. But I was also willing to do anything to sleep well and for the pains to go away. I said I would meditate twice daily for twenty minutes. I’m only on my second day and I already feel significantly better, and last night, as promised, I slept like a baby. This has given me hope for the future. With adequate sleep under my belt each day I can conquer mountains.

The average person needs seven to nine hours sleep a night to recover and repair the body. Kids need more, newborns need seventeen hours and kids need at least ten to twelve hours of shuteye a night. Usually, we need less sleep as we get older. But if you’re having difficulty sleeping, experiments have shown there are several things people can do to improve sleep quality: make sure you sleep in a dark bedroom, turn off devices and televisions, swap the caffeine or alcohol before bed for a warm milky drink, spend time in moving about each day, and reduce stress levels by exercise, therapy, or some other means.

If all else fails, why not try meditation? I have to say, I feel the best today that I have in a long time. Have you ever tried meditation?

Talk to you later.

Keep on Creating!

Yvette K. Carol

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 “We are more powerful than we have been lead to believe. Walk tall in your power and never give it to an outside source. True authority comes from within.”- R. Cefalu

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~ The Conundrum of the Youngest ~

What a kid. My youngest son never fails to amaze me. He’s been a walking list of ailments his entire fourteen years of life. I have had to slowly peel away the “onion rings” of his symptoms in order to get to the source of his real problems. I’ve raised all three of my kids alone. With the middle son’s special needs and the complex health profile of my youngest son, I’ve found that there is help out there, however nothing’s handed to you on a plate. You have to go and find it. You have to ask questions. You’ve got to self advocate. And, you have to keep a watchful eye on your child, keep notes, and keep going to health professionals until you get over the finish line with the answers.

My son started coughing at two weeks old.

There began the first part of our medical mystery tour together. In his first five years, we were in and out of doctor’s offices because of his cough. We got different diagnoses: hayfever, flu, childhood asthma, and he took lots of medicine. We tried different branches of alternative medicine: he was diagnosed with sour stomach, gluten allergy, and wheat intolerance, and we tried eating in many new ways. We tried Chinese herbal medicine as well, and they all did help a bit.

But nothing stopped the coughing. When he did catch the flu, he and I would spend long, frightening nights as I tried to keep him alive through his continuous bouts. We spent many nights at A&E.

I kept taking him back to the doctor. He was put on nebulizers, and given a blue and orange inhaler to take daily. At one stage, when things were at their worst, I spent $600 taking him to the doctor in one month. I was determined to get to the bottom of it. And, we did. Finally, on the umpteenth visit, we got a doctor who listened to his chest, and listened again, and said, “I think I hear a heart murmur.”

Those words set us on the course to finally learning what he really had, which was Congenital Heart Disorder.

We were put on the short list for surgery. Four months later, the youngest son underwent double bypass open heart surgery to have a closure of the large Atrial Spetal Defect, and repair of a partial anomalous venous drainage.

It was a harrowing ordeal he came through with flying colours. After the operation began a lengthy recovery process

It takes kids who have heart surgery a year to get over the anaesthetic, five years to get back to their pre-surgery weight, and ten years for their bodies to get back to their pre-surgery state.

My son had his surgery at the age of five, so next year he will pass the ten year mark. However, back in 2010, after the surgery had fixed his heart and healing was underway, he was still coughing.

This time, the rounds of visits were confined to a doctor and a homeopath. I felt he was allergic to something, so I requested of my doctor that we be sent for allergy testing. The result was, he was allergic to cats, dogs, fish, dust and egg. On a scale of one to ten, he was allergic to eggs at a ten. Eggs were off the menu. He was put onto daily antihistamines. Our homeopath prescribed homeopathic tinctures to help him get over flus and colds. All good except he went on coughing.

Long story short, we discovered the youngest son had asthma, not the ‘childhood’ variety, but the real kind.

Leapfrog a few years to last week. After years of the youngest son being teased in the family for being deaf, I finally decided to have his hearing tested.

To my surprise, we discovered he has a retracted eardrum and a loss of hearing. I thought, that makes sense of a lot of things. We’re seeing the specialist in four months, at Otorhinolaryngology.

This week, I followed up on another worry. I’ve always worried that the youngest son injures his ankles easily. A recent sprain wasn’t getting better, so I took him to a physiotherapist and a podiatrist. Turns out, he has a twisted pelvis with one hip more forward than the other. And he has an in turned foot. That explained a few things. Nevertheless, with daily exercises and an insert in his shoe, we can fix what could have been a developmental problem for him, in future. I’m so grateful. (I’m also thinking, what the heck with this kid?)

However, with each new diagnosis life gets easier. We gain new tools. Getting the answers is the thing. And from here, all is possible.

Talk to you later.

Keep on Creating!

Yvette K. Carol

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Failures I consider valuable negative information – Dr. Goddard

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~ A CALIFORNIAN ADVENTURE, Part 1 ~

Last Saturday, the youngest son left New Zealand along with twenty-six other kids, on this year’s ‘Californian Adventure.’ The trip is organized and run each year by Koru Care NZ, a charitable trust based in the South Island of New Zealand, whose mission statement is ‘making dreams come true for seriously ill and disabled children.’

As the last days counted down before departure, the tension began to mount, which escalated into pure adrenalin. We all got swept up in it. The tide of enthusiasm skipped from the kids, who were racing from all parts of the country to meet at Auckland International Airport, to the parents, whether through the Facebook page they’d set up or via those who could be there in person.

The kids were so happy, it was a force to be reckoned with.

The photos started flooding into the Facebook page, which has became my favourite port of call every day since. The organisers have been brilliant, because through the steady stream of pictures, we parents have been able to follow along for the ride.

Part one of their grand adventure has been spectacular.

The first day in California was a free day, to give everyone time to get over the jetlag. There were pictures of kids swimming in the pool and eating ice creams and visiting the local food joints. In these pictures, I can see the youngest son is still finding his feet, still feeling a bit awkward with his new companions. Their second day, they took a bus ride to visit the California Highway Patrol where the kids watched demonstrations by the officers and learned about the work they do. They received souvenirs and were allowed to take photographs sitting on the bikes and cars.

At this stage, the kids and the adults were visibly starting to relax more in the photos, and it seemed they were getting to know one another. I could tell the youngest son had befriended the other heart kid he was sharing a room with. In the pictures, the kids were chatting and getting on.

The whole group dynamic seemed to be becoming more like a family.

The fourth day, they took a bus tour to see the Hollywood Walk of Fame. There was a video taken of the kids screaming when they saw the Hollywood sign. The excitement was infectious. They went to Universal Studios, where they visited Harry Potter’s World and the Staples Centre. In these photos, the youngest son is having fun. There is a hilarious video posted on the KoruCare page of my son and others standing in front of a huge transformer.

The robot knocked off the son’s cap and said, ‘Pick up your hat.’ The son picked it up and the transformer knocked it off again. This was repeated four times to greater and greater laughter from the crowd, and the funny part was the transformer laughed each time too. The group of kids around the youngest son seem tight-knit, and everyone’s in a great mood. The footage absolutely made my day.

It constantly amazes me how much joy my son’s good fortune is bringing me. I’m so happy for him I could burst!

Today, being the fifth day of their Californian Adventure, the Koru Care team visited SeaWorld in San Diego. That would have been the first time my son has ever seen a display like that, and I’m sure he would have been in awe and wonder.

The way the trip has been organized, every morning the kids are told where they are going that day, they have no idea beforehand. The youngest son’s carer had explained the intention behind it being ‘that every morning will be like Christmas morning.’

I wish I could be a fly on the wall for tomorrow morning. Because tomorrow they get to go to … drum roll, please … Disneyland!

The reactions should be priceless. My son will be over the moon. As his cousin was pointing out to me today, ‘This is a big step up from having gone on his first roller coaster ride, this year.’ In January, the boys and I had visited our first ever fun fair. The boys couldn’t get enough of the rides, and the youngest son said it was the most fun he’d ever had. So, for a treat, in May, I paid for him and friends and family to go to Rainbow’s End for his thirteenth birthday. He spent a delirious day going on every ride. That was when he went on his first rollercoaster. And here we are, in October, and he’s about to go to Disneyland! He’ll be in seventh heaven.

I’m so grateful to the good folk who do all the fund raising for these trips and the running of Koru Care Nz What an incredible organization. Support in any way you can. Thank you!

 

Talk to you later.

Keep on Creating!

Yvette K. Carol

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“May your dreams be larger than mountains and may you have the courage to scale their summits.” -Harley King

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~ A CALIFORNIA ADVENTURE ~

A few months ago, our family got some great news. The youngest son had been chosen as a “heart kid” (a child who has undergone open heart surgery) to go along on this year’s ‘California Adventure.’ A trip to Disneyland is organized and run each year by Koru Care Charitable Trust NZ, ‘making dreams come true for seriously ill and disabled children.’

I overheard a conversation the youngest son was having yesterday with friends while playing Fortnite. One member of the squad asked, “Why do you get to go to Disneyland?” and another answered, “It’s his reward for surviving heart surgery.” That’s the truth and yet, my youngest felt bad about accepting the gift. He said he felt someone else should be going on the trip in his place because he ‘didn’t deserve it.’

And so, I gently reminded him of the terrifying journey of the first five years of his life. It was an endlessly harrowing ride for me as his chief nurse and caregiver.

The youngest of my three boys was born in 2005, with complex congenital heart disorder (or CHD), although we did not know that at the time. The first clue came when he started coughing at three weeks old, though he had no other symptoms of ill health.

The cough would come and go from then on, however when he did contract the flu, then his health would plummet fast and the cough would become life threatening and continuous. It took me five years to figure out what was wrong, as we went down the road of misdiagnoses and educated guesses, and countless trial treatments.

Finally, after trying everything, I told our doctor the whole story. She listened carefully to his chest. Her diagnosis of a heart murmur then led us on to the hospital tests, which finally confirmed the actual problem was a sizeable hole in his heart or atrial septal defect. The medical part of our journey began there.

In 2010, he underwent double bypass open heart surgery. The operation was later added to the “unusual casebook.” The “hole” in his heart was ‘more than just a hole, there was only a rim between the upper chambers,’ the surgeon, Dr. Elizabeth Rumball, told us later, ‘and his heart had grown a single vein from the liver to the bottom of the heart,’ something she had never seen before. Dr. Rumball had to figure out how create an autologous pericardial patch to fix both issues.

After six hours of surgery, my five-year-old woke up in Pediatric Intensive Care, with a gash down his chest, in a lot of pain. Only three days out from the surgery, he’d been moved to the high dependency unit and was already taking his first steps. Three days later, we were released to go home.

We’ve come a long way since those days. The youngest son starts high school, next year. One of the teachers asked me how having had the surgery affects him now. I said, he’s fine now, yet, he will always be that little bit “fragile,” and he won’t have quite the same stamina and energy levels as other kids. Child heart patients are also susceptible to emotional, developmental and behavioural problems. We haven’t had any issues there, so far.

He has to take daily medications and rest a little more than other kids his own age. But, generally he is healthy, fit and well. He bikes to school each day. And, wonderfully, gone are the days and nights of coughing. He has quality of life and the prospect of a healthy future ahead.

With a bit of gentle prodding on my part, the youngest son had remembered his journey and accepted that maybe it was acceptable for him to go on the California Adventure.

After another month and a half, I started the process of medical clearance for him to take the trip. I started on doing the paperwork, and buying the things he would need to take with him. I borrowed luggage and we went to get some money changed into U.S currency.

As the weeks have gone by, the pressure to have everything in order has increased. And in the last two weeks, I’ve been flat tack. Tonight, the bags are packed. The boy has had his nails trimmed, and he’s had a haircut.

Everything is done, at last.

On Saturday, he leaves on the California Adventure with twenty-four other lucky kids.

The youngest son said, “I don’t feel happy very much, but about this trip, I feel the happiest I’ve ever been.”

The joy! What parent doesn’t want to hear that?

Talk to you later.

Keep on Creating!

Yvette K. Carol

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You don’t have favourites among your children but you do have allies. ~ Zadie Smith

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~ A TRIP OF A LIFETIME ~

In October of this year, my youngest son will be going on the trip of a lifetime. He and eleven other lucky kids from across New Zealand have been chosen to go to Disneyland.

Two weeks ago, we received an invitation to apply for a place on the coveted annual trip with Koru Care New Zealand, through our association with Heart Kids NZ. Yesterday, we got the happy news he had been accepted, and we’ll happily do our bit to help raise money for the trip, as this is such a great opportunity.

Koru Care New Zealand is a charitable trust established in 1983. It’s run by volunteers ‘making dreams come true for seriously ill and disabled children.’ Heart Kids NZ is another charitable trust. It’s committed to providing lifelong support to those born with congenital heart defects and heart disease.

The youngest of my three boys was born in 2005, with complex congenital heart disorder (or CHD), although we did not know that at the time.

The first clue came when he started coughing at three weeks old, though he had no other symptoms of ill health.

The cough would come and go from then on, however when he did contract the flu, then his health would plummet fast and the cough would become life threatening and continuous. It took me five years to get a diagnosis, as we went down the road of misdiagnoses and educated guesses and countless trial treatments.

Finally, after trying everything, I went back to our doctor with the whole story. She listened carefully to his chest. Her discovery of a heart murmur led to the hospital tests, which finally confirmed the problem was a hole in his heart or Atrial Septal Defect.

In 2010, he underwent double bypass open heart surgery. The operation was later added to the “unusual casebook.” The hole in his heart was ‘more than just a hole, there was only a rim between the upper chambers,’ the surgeon, Dr. Elizabeth Rumball, told us later. ‘And his heart had grown a single vein from the liver to the bottom of the heart,’ something she had never seen before. Dr. Rumball had to figure out how create an autologous pericardial patch to fix both issues.

After six hours of surgery, my five-year-old woke in Pediatric Intensive Care, with a gash down his chest, in a lot of pain. His recovery process began there. Only three days out from the surgery, he moved to the high dependency unit and was already taking his first steps. Three days later we were released to go home.

We’ve come a long way since those days.

They say it takes paediatric heart patients a year to get their energy back and a decade for the body to recover to the pre-surgery state, however, he is in good health these days. The difference with heart kids is that they are a little “fragile,” they don’t have the same stamina as other kids. They are also susceptible to emotional, developmental and behavioural problems.

My son has thrived since the surgery. Gone are the days and nights of coughing. He has quality of life and the prospect of a healthy future ahead, thanks to the wonderful doctors and staff at Starship Children’s Hospital.

While we were in hospital, we joined the amazing Heart Kids NZ foundation. We put his name down on the list of kids interested in going to “Heart Camp,” a weeklong retreat each summer. From the age of eight, he has gone to camp every year. He’s learned adventure skills like kayaking, abseiling and rock climbing. He’s sat around campfires, and gone swimming, ridden the flying foxes and water slides. He’s made friends and had important experiences of independence. Because he was well known at heart camp, his name came up when Koru Care said they had places for four Heart kids on the Disneyland adventure.

My son was the right age and state of health to be eligible, so his name went forward with a lot of others. And we were lucky enough to get picked. He was excited when I told him the good news because he has never travelled anywhere or been to a theme park, and he’s always wanted to go. This sweet boy who has been through so many trials in his life, will get to go on the adventure of a lifetime, to Disneyland!

Thank you to Koru Care New Zealand and to Heart Kids NZ and to the medical staff along the way for making all of this possible and for making a boy’s dream come true.

Blessings come in many ways, even when they’re sometimes dressed as catastrophes.

Talk to you later.

Keep on Creating!

Yvette K. Carol

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If you can dream it, you can do it. ~ Walt Disney

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~ A Farewell for My Father ~ Part One

On Monday morning, I got the phone call most people dread, and heard the words no one wants to hear, “Dad’s died.” The bottom fell out of my day and my world.

After my father’s miraculous recovery from double pneumonia last year, we had gotten another precious seven months with him. I wonder if it took a toll on his heart. Last weekend, dad suffered a massive heart attack, and he died three days later in hospital, surrounded by family loving him to the end.

At first, I went into a state of shock. Nothing seemed real, and everything seemed to happen around me without touching my bubble.

I threw the boys and bags into the car and we headed for dad’s seaside town, as I wanted to ready the house and prepare for my sisters and brother to return (they’d been the amazing support team for dad through his final hours in hospital).

Driving along, I searched the landscape for some sort of message or reflection of dad passing into the realm of spirit. Then, as we arrived in his town, we saw an unusual sight; the peak of the mountain where my father lived was obscured by a cloud. The headless mountain seemed to echo my feelings at the idea of our family continuing without dad at the helm. When my siblings arrived, we agreed, it was as if the mountain were “flying at half mast.”

At dad’s house, we could hardly see the surroundings for the white-out. The entire place remained cocooned in this soft white cloudy mist for two days, as the rest of the family arrived in dribs and drabs, and the crying began anew.

We spent a lot of time sitting talking, sharing Grandpa stories and making the necessary arrangements, trying to get our heads around our new reality. Dad ‘had had 85 years of excellent health’ and ‘a life well lived,’ he’d left ‘a good family’ and an even better reputation as people told us, kindly. Yet, nothing could ease the pain of the loss.

The service was held at dad’s beloved church, which he’d raised funds to build for the community over many years and had helped to run and maintain. People turned out for his Committal Service saying, their town would ‘never be the same again,’ and that everyone was scrambling to find volunteers willing to take over his many roles in the community, and how much they’d miss him. Boy, so will we.

All in all, we were happy we gave dad a fitting send off. The whole family contributed at the service. At the cemetery, extended family sang ‘Let not your heart be troubled’ (John Ch 14:1-6).

After baking in the sun at the church and the interment, and attending the reception at lunchtime, we headed back to dad’s place to change out of our hot mourning attire. We went to the beach for the afternoon, and I can’t even tell you how refreshing and good it was to bathe in the sea and let the salt water wash the remaining residue of the emotional preceding days away.

Those of us who could, elected to stay and hang out together another day and night at Grandpa’s house. There were more conversations to be had, there were more tears to shed, and we needed extra time to continue to come to terms with the enormous loss. The patriarch is gone. It’s inconceivable and yet it is real. The whole notion of dad’s absence still messes with my head.

This morning, before we left, we trekked to the top of the mountain.

Every scene takes on more poignancy when you’re in the throes of grieving. Every situation, every conversation seems heightened to new degrees of sensitivity. Even the light streaming through the trees as we descended seemed to be imbued with special cast and resonance, as if the environment was trying to speak to us.

We made the drive back to the city around noon. I’m home, and yet, everything feels different, my foundations have changed.

Looking back on the last week, I think the family worked together and we did well with a difficult situation.

Despite terrible initial writer’s block, in which it took me the whole four days after my father’s death to come up with the words for his eulogy, I gave it my best.

The speech I gave at the service will appear as Part Two, next week.

Joy will return one day, but for now, life as I knew it has disintegrated, and pieces of my heart have dispersed with my father.

Talk to you later,

Yvette K. Carol

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‘The poet’s, the writer’s, duty is to write about these things.’ ~ E.B.White

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~ Different Milestones ~

As a parent, your children pass so many milestones which at the time seem incredible and wondrous: their first tooth, their first smile, first step, first day at school, first night away from home, passing the double digits, and so on. As a parent of a child with CHD, Congenital Heart Disorder, you have additional, special milestones. Surviving the surgery is the first one.

And it’s not a given. You come face to face with this brutal reality the first day you arrive in the Children’s Heart Ward for your child’s procedure. The specialists sit you down to explain the risks of open heart surgery. The real danger lies in what they call the “bypass.” The surgeons must stop the heart beating, and divert the blood, passing it through a machine while they work on the heart. This creates the threat of blood clotting. They tell you, your child may be permanently brain damaged or die. You have to sign a waiver at this point which basically says you agree to take these risks.

Next, the psychologist shows you a book of the photos of the surgery and graphic detail of the children’s chests afterwards. This is tough love; they say the preparation is necessary because otherwise, the shock for the parents is too great.

By this stage, you’re quaking in your boots, trying to look strong and brave for your child. You have to be the parent, even though you wish you could run home to your own.

Therefore, surviving the surgery is the first milestone.

My son was an unusual case, and patching the ASD (Atrial Septal defect) did not entirely fix the problem. When they took him off bypass the first time, and closed him, the surgeons saw the blood coming out was still blue instead of red. Something was still wrong. They had to open the heart again, stop the heart and put him on bypass for a second time.

They discovered an “anomalous” vein going down to the liver. This defect was “unique to him.” They replaced the patch so it covered the hole and the unusual vein. This time his blood ran red. My five year old had survived a double bypass.

He made it through that terrible first day in the Pediatric Intensive Care Unit. “OW! Mama it hurts!” were his first crying words. The second day, he said, “I need to get well!” He made it through the first few days in the High Dependency Unit, and taking his first painful steps walking in the ward. Surviving week one in recovery is the second milestone.

Then we went home and he managed the first six weeks at home when CHD children must not fall over or take a blow to the torso and getting comfortable enough to sleep every night is the tricky part. Third milestone, ticked!

It typically takes CHD children twelve months to regain normal energy levels. My son had only just started at school when he had to have his surgery. When he returned to school a month later, he could only do half days and I had to give him a piggyback home every day, because he was too tired to walk. A year later, he was at school doing full days and walking both ways. Fourth milestone!

In 2011, we returned to the Children’s Heart Clinic for a check up. Most patients get “discharged” at this point. 95% of cases survive into adulthood which is a good success rate. However my son had been added to the “unusual case book,” and as such, the surgeons asked us to return in five years, so they could check on him again.

This week, we went back for our second check-up. Returning to the ward brought all the memories back. We peeped in down the hallways. My son remembered that when I’d placed him on the metal bed in the operating theatre, he’d worried that the blanket wasn’t thick enough to keep him warm!

The nurse gave son a check up. We filled out a questionnaire. Yes, he still gets tight-chested sometimes when he runs, yes, he gets blue lips when he does a lot of exercise, and yet, that doesn’t stop him. He plays golf and soccer, he’s learning to play the drums, and he runs around as much as the other kids. He’s fit and healthy.

The nurse gave him an E.C.G. and then an ultra-sound. The heart surgeons conferred and finally announced he was officially “discharged.”

Son and I “high-fived” on the way to the car. Yes. He made the fifth milestone. “Onwards and upwards from here,” as my father would say.

What milestone has made your heart sing lately?

Talk to you later.

Keep on Creating!

Yvette K. Carol

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“It doesn’t hurt to be optimistic. You can always cry later.”

— Lucimar Santos de Lima

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~ How Useful Are the Things We Say to Ourselves ~

“The essence of all beautiful art, all great art, is gratitude.” ~ Friedrich Nietzsche.

I missed the mark with a speech at Toastmasters this week. With a topic I knew well: writing, and raising children. I flubbed a few lines, got some words mixed up and forgot a key point, and felt it was an overall disappointment.

It was another one of those notches in the belt of life’s defeats, which turn into teachable moments only in hindsight.

I knew I hadn’t hit the mark even at the time I was speaking. I could feel the audience’s attention slipping. I didn’t have them in the palm of my hand, the way I do when I’m in the zone.

After the meeting, instead of shaking my hand warmly, there was some avoidance. I came home and watched the video back. I saw that I started the speech with a sigh, which is never a good thing. I used the wrong word in a couple of places without realizing, and that had changed the message. I waffled on at the end. It was a disaster. No wonder people avoided me afterwards.

I felt disappointed. “You picked the wrong word,” I said to myself, watching the footage. “If only you’d stopped and taken a silent breath.”

I berated myself on and off for about half a day. After that, it wasn’t that I felt bad, I felt nothing. I was blank.

Which brings me to the point, how useful are the things we say to ourselves? What effect are they having on our lives?

In my case, I went to that giant therapist in the sky, Facebook, and shared via status update.

Normally, my posts about stuff on Facebook might garner six or so “likes.” When I went back online the next day, I saw that my post had 22 “likes” and there were comments: beautiful, heart-felt encouragement.

Friends had taken the time to remind me of the steps forward I have taken. The words melted my heart. I sat there and wept into my keyboard like a baby, until my tea went cold.

Later, I dried my face, made a fresh cup of tea, and I could feel the difference within. The veil had lifted. The blankness was gone. I could feel again, I could smile again. I was free. Wow. What a revelation about the power of the right words and a good cry. Thank you again to all my beloved friends.

By sharing with others, by caring about others, and by practising the mindfulness of saying loving words to ourselves and those around us, all manner of ills in this world can be healed.

The right words at the right time can be good medicine.

I remember back in the day, about twenty-five years ago, I read a small, life-changing book called “Creative Visualization” by Australian author, Shakti Gawain. https://www.amazon.com/Creative-Visualization-Meditations-Imagination-Create/dp/1511326948

That was when I became introduced to this idea of the manifestational juju of the words we say to ourselves. I learned we can radically alter the experience we have by changing our inner dialogue. Gawain taught about the benefits of saying positive statements to ourselves, which she called daily affirmations.

In essence: we can aid and sustain ourselves by saying the right words.

Here’s a good example. About the FB post on the “failure” of my recent speech, friend Sharon Hinckley said wisely, “Could you lose those ‘high expectations’ and just go out there and have fun?” She altered my perception and let in the light by using the right words.

The right phrase can alter the atmosphere of our lives and elevate the tone.

The truth is, our inner dialogue is always going on anyway, and so we might as well use it to our advantage. The first step is to come up with some phrases which work for us. The next step is to remember to say them to ourselves a few times daily. *Tip: try making it part of the daily routine so they end up becoming automatic. *Tip Two: try thinking of three things each day you are grateful for.

To return to the question I started with: how useful are the things we say to ourselves? They’re potentially life-changing, if we use the right words. What we say matters.

Have you ever tried doing affirmations? Do share…

Talk to you later.

Keep on Creating!

Yvette K. Carol

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“To transform your life, you must find a way of being grateful for what you have now.” ~ Rhonda Byrne

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IWSG ~ Confessions of a Marketing Disaster ~

It’s time for another group posting of the Insecure Writer’s Support Group! Time to release our fears to the world – or offer encouragement to those who are feeling neurotic. If you’d like to join us, click on the tab above and sign up. We post the first Wednesday of every month. I encourage everyone to visit at least a dozen new blogs and leave a comment. Your words might be the encouragement someone needs.

Every month, the organisers announce a question that members can answer in their IWSG Day post. Remember, the question is optional!!!

April IWSG Day Question: Have you taken advantage of the annual A to Z Challenge in terms of marketing, networking, publicity for your book? What were the results?

Answer: No.

Truth is, I suck at marketing. I remember scoffing a few years back over a writer’s comment on LinkedIn, when he said he wouldn’t be doing any of his own marketing, he was ‘the talent.’ But, since then, I’ve barely done any marketing myself, so who am I to talk? It’s a big failing so I am outing myself, right here.

The reality for all of us as writers in today’s world is that more people are writing and publishing books than ever before in history, and fewer people are reading them. This from John Sargent, CEO of Macmillan: “There are fewer and fewer newspapers out there, and their audiences are shrinking. Discovery is an ever-growing problem. Big titles get bigger, and everything else gets harder and harder to find and sells fewer and fewer copies.”

Every writer, actor, model, artist, dancer, and musician in the current environment has to sell themselves through social media. We understand how it works and we do our bit to tweet things and share for our friends. Yet, I still have a visceral reaction when someone I’ve been talking to on sm for a while turns around and asks me to buy their book. Just this week, a friend I’ve been talking to and liking posts with, etc, for a year sent me a private message on Facebook asking me to buy her book, and help her book get off the ground by participating in a thunderclap campaign. There’s a part of me that wants to help her as a good person should, and there’s a part of me that’s pissed off with her now. It’s like; she’s betrayed my trust, so I won’t view her connection with me the same way again. I can’t quite get over that feeling of betrayal, and I don’t want to do it to other people.

It’s not that I haven’t tried to tackle marketing.

Five years ago, I read books on how to market myself as a new author. I started the blog. Tick. I set up my own website. Tick. I joined a bunch of social media sites and started chatting. Tick. I started compiling an email list and writing a regular newsletter. Tick. I made friends with everyone I met and traded details. Tick.

Yet, when my first book, ‘The Or’in of Tane Mahuta’ came out in 2015, not only did I not ask my friends to buy my book, I actually bought sixty copies and gave the books away. I posted packages to the really special friends I’d made on the net, all around the world. I thought I’m not going to make a penny out of this. And, I didn’t.

*This is not something I would advocate for those writers starting out, who are hoping to make a living out of their work, by the way.

This trait means I can’t quite seem to get over the hump between me as the writer and the speed bump of selling my book to my friends. Lucky for me, profit is not as high on my list of priorities. I go by the adage, when you realize you have enough there’s always plenty. I run a tight ship and I have enough so I don’t need more. I like to measure my success by my personal growth and the good friendships I have made along the way. The online writers community is amazing. My friends are so sustaining and caring. Right now, that’s more important.

I love this life of being a writer, and creating books. I’m editing my second book, ‘The Sasori Empire,’ and the message that comes through towards the end is how important his friendships are becoming to the hero, Aden. Interesting how life and one’s fiction often parallels, isn’t it?

How about you, what marketing do you do?

Talk to you later.

Keep on Creating!

Yvette K. Carol

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“If you don’t make mistakes you won’t make anything.” ~ Anon

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