February 3 2016

Day 3 – CHD Awareness Month



Today is the third day in my CHD Awareness campaign.


What is Acquired Heart Disease?What is Acquired Heart Disease?

Acquired heart disease develops later in childhood, usually through illness or infection.

Kawasaki disease and rheumatic fever are two of these acquired heart diseases and they are the two most common acquired heart diseases amongst children.

 

 

 

 


2016 Sweetheart Day Photo Challenge Day 3 - Inspires Me

2016 Sweetheart Day Photo Challenge

Day 3 – Inspires me…

This is a photo of a plaque that my grandmother gave me in high school.

It is a quote from Thoreau and reads “If a man does not keep pace with his companions perhaps it is because he hears a different drummer.  Let him keep step to the music which he hears.”

She gave it to me because I was struggling with who I was.  I have always been one of those people who never fitted in, I have always lived in worlds of dreams, (I believe in unicorns).  I have always been different, strange, weird, nerdy, and old-fashioned.  This quote suits me.

I believe it also suits all of the HeartKids and Heart Angels out there.  They physically hear and live to very different beats to the rest of us.  They live very different lives to ‘normal’ people – I think it suits them as well.


2016 HeartKids Awareness Photo Challenge Day 3 - Black & White2016 HeartKids Awareness Month Photo Challenge

Day 3 – Black and White

Finding a black and white image that I like was difficult in this world of vivid and extreme colours, but this is one of my favourites.

It was taken on the day of Bryce’s third birthday party, he was all dressed up to party with cool, spiked hair and a fancy shirt.  I sent him and his dad out with his grandparents to get some family photos done while I set up for his birthday party.

This was taken almost a year before his second open heart surgery in 2011.  I think it captures his spirit beautifully – handsome, funny, cool, eclectic (he likes bow ties!) and simply adorable.

February 3 2016

Day 2 – CHD Awareness Month

Yesterday was Day 2 of my CHD Awareness month campaign.

I apologise I didn’t get this one out yesterday, it has been heart wrenching to write.

Firstly, because I discuss what congenital heart disease is and the guilt and helplessness that I have about it and how it affects my family.

Secondly, one of the photo challenges for today is diagnosis.  I am sharing an image of what Bryce’s heart looked like at birth but I am telling the story of about how we found out about it.  I have shared the outline of the time with a number of people, I have never really told the whole story – this is my memory of that time.  I won’t say its accurate, I don’t have Brad’s version but this is how I remember it.  And as hard as it is for you to read, it has been a thousand times harder to write and millions of times harder to live it.


What is Congenital Heart Disease?What is Congenital Heart Disease?

These are heart defects that are present at birth.

They may occur in the walls of the heart, in the heart valves or in the arteries that transport the blood supply.

In most cases, there is no known cause for congenital heart disease, and statistics show that in only 20% of cases is there a genetic cause for the defect/disease.  Essentially, no one knows why or what causes these defects.

Bryce is one of the unknown cases.  No one can tell us how, why or what caused his heart defects and as his mother, I have blamed myself, felt guilty that something I did or didn’t do harmed my child before he was even born.

Yes, the doctors, nurses, social workers have all told me, repeatedly, that it was my fault, that I didn’t do anything, that ‘it just happened’ and that it ‘just happens’ in 1 in every 100 births.  But to be honest, that doesn’t help, if anything for a while it made harder for me.  I needed answers and I wasn’t getting them, not because the doctors didn’t tell me, but simply because they don’t know.  They can say all they want that it ‘just happens’ and isn’t my fault but if they don’t know why or how it happens – how do they truly know it wasn’t my fault?  To me the answer is simple – they don’t.  And I have to live with that. Bryce has to live with that. My family has to live with that.

It has taken me a long time to accept that as far as the professionals know I didn’t do anything to cause this harm to Bryce.  To accept that they simply don’t know.  I have accepted that now, but it doesn’t mean I don’t feel guilty.  Guilt is always there in the back of my mind – sometimes it’s so strong I want to hide, to run away.  But I don’t, I take a deep breath, I might scream, shout and rage, but eventually my strength returns and I continue the fight to keep my child healthy and safe, I take him to doctor appointments, to physiotherapy appointments, spend money to see he gets the best care we can afford so he will live a long, happy, quality life.

I can’t speak for Brad, my husband, I can only imagine what he feels and thinks – I often think it is harder for him at times.  He is not the sort of person to scream and shout, that’s me – the world knows what I think, so it’s hard to know sometimes.  He works hard to provide for us so we have a nice home, so Bryce can have the medical care needs and so I don’t have to work so I can be available when Bryce is sick or sent home from school because he is unwell.

That is how congenital heart defects affects my family.  HOW DOES IT AFFECT YOUR FAMILY?


2016 Sweetheart Day Photo Challenge Day 2 - Heart Shape

2016 Sweetheart Day Photo Challenge

Day 2 – Heart Shape

This is my heart warrior holding a heart-shaped pillow he gave me for Mother’s Day.

 

 

 

 

 


 

 

2016 HeartKids Awareness Photo Challenge Day 2 - Diagnosis2016 HeartKids Awareness Month Photo Challenge

Day 2 – Diagnosis

This image was created for me by Heart Baby Home, who has numerous images of CHDs, repairs, and the like to help explain why our CHD are different.

This is a visualisation of what Bryce’s heart looked like when it was born.  I have spent the best nearly 9 years trying to explain to people what his defects are while only just understanding them myself.  I wish I had of had this done when he was diagnosed – it would have made the best 9 years a little easier.

While I can not remember the dates, the story of Bryce’s diagnosis will live with me for the rest of my life.  Brad and I were up at the local hospital to have our 18 week scan.  We were still getting used to the idea of being pregnant and having a baby, still getting over the shock of it.  Because I am an overweight person, our previous scans had been difficult as the stenographer had problems getting decent pictures of the baby.  This appointment was no different, the lady commented several times how hard it was.  At one point, she said something like ‘I’m having problems getting decent pictures, I need to speak with your doctor.’  Then she left, she came back about 20 minutes later and said that because of the difficulty of getting good, they had decided to send me to Brisbane to get better scans on their better equipment, and then told us that it was nothing to be concerned about, just wanting to be sure, and that the doctor would speak with us at our antenatal clinic a couple of days later.  We weren’t too concerned, we were assured we had nothing to worry about.

At our antenatal appointment a few days, we waited hours and hours and hours to see the doctor and midwife.  After seeing the waiting room fill and empty several times (they were all there for antenatal clinics), we asked what was happening and why we were waiting to so long, to be told that we had been put on the special list which meant that we had to see the doctor and the midwife and needed longer for both appointments, and therefore had to wait longer than normal as a result.  We were not happy but there was nothing we could do about it – so we waited.

Eventually we saw the midwife, had all the checkups, questions, etc that you go through for these things.  We were then taken to the doctor who did his own exam and then confirmed that we would be sent to Brisbane for better scans because they had problems getting images of the baby because of me being overweight and the baby was in an awkward spot.  He did mention, in passing, that a cardiologist would be on standby.  We queried this and were told that it was just procedure because this is the heart scan and the cardiologist is on standby in case the scans show a problem.  We asked, again, was there something wrong, should we be concerned, is there a problem?  Again we were told no, that it was all just procedure, nothing to worry about.

Because our appointment in Brisbane was on the Thursday, we decided to make a long weekend of it and catch up with our friends and old work colleagues, there was HUMBUG on and it would be like a last holiday before the baby was born.  We arranged dinners, catchup and the like – we were in a good frame of mind.

On the Thursday, we arrived in Brisbane, found our way to the Hospital, where we were met by a lovely midwife who had us complete a bunch of paperwork, including a medicare form for a cardiologist.  We were surprised by this, and I remember saying to her that we were told that the cardiologist was only on standby and that we were told this was just a routine ultrasound to get better images of the baby.  She replied that no, the cardiologist would be the one doing the ultrasound.  At this point, we were confused and did not know what was going on.

We went into the sonar room, I laid on the bed, the technician introduced herself and told us that we had to wait for the cardiologist to arrive.  When he arrived he introduced himself quickly, and started to direct the technician as what images he wanted, what angles, all technical stuff.  I don’t know how long it went for, but it felt like I was laying a long time being prodded and geled and not being told anything.  At the end, he told us that the midwife would take us to the “counselling room” so we could have a talk.  By now, we were even more confused and becoming very worried and anxious – we still didn’t know what was going on.

When we sat down with the doctor and the midwife, he asked us what we had been told about why we were in Brisbane.  We told him about the problems the hospital had been having getting pictures of the baby and that they had sent us to Brisbane to get better images on better equipment.  To this day, I really don’t think he was listening to us, or heard what we said, because he next words were “Well, it’s what Rockhampton thought.”  And proceeded to show us a letter from our hospital in which they state that they believed the baby had a heart defect called Hypoplastic Right Heart Syndrome.   It still meant nothing to us, I remember thinking, they lied to us, they told us it was ‘routine’, that there was nothing wrong, but they lied.

I think the midwife realised that we still had no idea what they were talking about and eventually the doctor explained about heart defects and what that meant for us and the baby.  Some of that is a blurred, I think in my shock I have chosen to forget some of it.  I remember crying, a lot, I remember them telling us that the baby would have to have surgery within two weeks of being born and I remember being told that we would have to come down to Brisbane at 35 weeks to have the baby there.

We were escorted out of the hospital, still very upset, confused, dazed and just wanting to be home.  We walked down to the bus stop in silence, just holding hands saying nothing.  I had decided very early on that didn’t want to know the sex of the baby, that I wanted it to be a surprise.  Whilst we were waiting at the bus stop, I remember talking to Brad about whether or not we wanted to find out the sex of the baby, in case it died, but we agreed not to because we now knew too much about the baby and maybe it would be nice to keep it a surprise.

We went to the Mall because that’s what we had decided to do that morning before all this had happened and we really didn’t know what to do.  We found ourselves in a food court, not eating what we had just bought and thinking about the phone calls we had to make to our family to tell them.  Brad called his parents and I called my dad.  I don’t know how Brad’s call went or what he said, but the first words out of my mouth were “Dad, there’s something wrong with the baby.”  I can’t remember the rest of the conversation, or the other two after that (my mum and my grandmother), I honestly don’t want to remember, they were the hardest, most horrible calls I have ever had to make.  No one should have to make a call like that.

 

February 1 2016

Day 1 – CHD Awareness Month

Today is the first of February, and while most people think of celebrating love and romance, there are a few of us with something else on our minds – CHD Awareness!

I am going to teach about CHD, what it is, how affects children and their families.  I am going to overload you with information and facts, AND I am going to spam you with photos – there are a number of photo challenges this month that I am going to participate in.

My aim is to make at least one person aware of and informed about CHD.

Before I go any further, I guess I should tell you why CHD and raising awareness of it is important to me and my family.

My son, Bryce, now 8 1/2 years old, was born with congenital heart defects. I will go into details in later posts about exactly what his CHD’s are and how they affect him, and in turn us, for now it is sufficient to say that he only has half a heart.  He has undergone two open hearts surgeries and number of other related procedures, endured months in hospital and is on medication for the rest of his life – however long that may be.

That is why raising awareness of CHD is important, because the more people who are aware, the babies we save by early diagnosis, the more money can be raised used to fund research as well as support HeartKids and their families, the more people talk about it the better.

When I was told that my unborn baby had heart issues, I was unprepared and have never heard of CHDs – I am now living in a totally different world.  Being a parent is hard, demanding and joyful, being a Heart Parent is twice as hard, twice as demanding and joy is hard to find, especially when your child is struggling to breathe and there is little you can do to help them.


What is CHD?What is CHD Awareness I hear you ask?

CHD stands for Childhood Heart Disease.

These are diseases or illnesses which affect the heart, lungs, arteries, veins, etc of children.

CHD can be either:

  • CONGENITAL – meaning that the defects are present at birth
  • ACQUIRED – meaning that disease developed in childhood through illness

About 1 in 100 babies have congenital heart defects.


 

2016 Sweetheart Day 01Sweetheart Day Photo Challenge

Day 1 – Something Red

This is a photo of Bryce with a beautiful material red rose he gave me several years ago.

#SweetHeartDay #showyourheart

 


2016 HeartKids Awareness Month Day 12016 HeartKids Awareness Month

Day 1 – Heart Child/Heart Angel

This is Bryce tonight being silly so I could take a photo of him for the challenge.

On days like this, at times like this, I am grateful every day for the hard work, talents, skills and patience of the doctors, nurses and other professionals who have helped us get Bryce to where he is today.  He continues to improve daily and is a funny, weird, intelligent, amusing, creative boy.

Today also is a chance to remember those poor little souls who are struggling and fighting hard in the war on CHD, to remember those angels who have left us behind while they fly high and adventure well and watch over us.

Rest in peace beautiful angels.

#myheartkid #HKAwarenessPhoto #HeartChild #chdawarenessmonth #chdawareness #1in100


So please take the time to research and learn about CHD, talk to your family, talk to your friends, talk to your work mates, spread the word about CHD.

 

 

December 9 2015

Welcome to my space

Hi

Maybe you’ve been here before, maybe you haven’t, either way welcome to my space.

IF you have been here, it was probably a long time ago, I haven’t written anything on here for YEARS!  That is about to change.

You see, I am returning to the world of academia to complete the final year of the Master of Letters in Creative Writing.

8 years ago, I had to give up my studies because I had a child, that in itself is not unusual.  What made our situation difficult is that my son was born with Congenital Heart Defects (CHD).  Without going into specifics at this time, he was essentially born with half a heart.  He has undergone a number of open heart surgeries and other related procedures.  At times he has been a very sick little boy.  This made it very hard for me to complete the final year (thesis year) of my MLitt, so it’s been on hold for all that time.

I am now at a point in my life where my son is stable, healthy as he can be, and managing well.  This means less stress and worry for us.  It also means that I am at a better place emotionally and mentally.  I am ready to face a new challenge – complete my thesis for my Masters.

Now, I can hear you asking what on earth all this has to do with my reopening my blog.  It’s quite simple really, my blog is going to my writing practice forum.  I am so out of practice with writing and apprehensive about what I have to do next year to complete my thesis that I have decided that I need to get into some writing habits and get some practice before I start my thesis in March.  So I decided to reopen my blog and use it for my practice.

One of my ideas is to get some writing prompts and just write whatever comes to mind with little to no editing, just to write and see what happens.  Hopefully this well get the creative juices following and get me back into the writing frame of mind.

I am also going to use it to raise awareness of CHD’s and hopefully educate some people along the way, because trust me – it’s scary stuff.

I will also use this blog for more personal stuff like sharing my recipes and information about unicorns.  (BTW I BELIEVE IN UNICORNS!)

I welcome constructive and appropriate feedback on my writing, personal attacks are not welcome.  I aim to write something everyday, even if it is just a recipe.

I hope you enjoy reading this – and if no one is reading that’s ok too – this mainly for me.

I guess this counts as my first day of writing practice – wasn’t that hard…  Setting up the blog on the other hand, that has its issues.

Thanks,

Kawani