Wednesday 27 February 2013

From a sibling's point of view



"In time of test, family is best." - Burmese Proverb

I know when I was growing up, I often thought my eldest brother got wayyyy more attention because of his heart condition, and of course, this was completely unfair to the rest of us.  Why should he get more of Mum and Dad’s time than us?  My Mum wasn’t even his Mum!  Well, that was in the mind of a young child anyway.  I love my brother, and I absolutely adored him as a kid, but there were times when I thought he was just ‘putting in on’ for the attention.  I think having grown up with an older brother with a life-threatening CHD has put me in the unique position of being able to understand how Julian’s younger brothers and sister will feel while they’re growing up. 

Brothers and sisters (both younger and older) will often feel left out if a sibling is ill.  We were lucky – if you can see it that way – that Ayan was only a baby when Julian was diagnosed so our three younger children have all ‘grown up’ knowing that their big brother has a sick heart.  I don’t doubt that it would have been much harder if he had been a ‘normal’ child and wasn’t diagnosed until they were all older.  As parents, we can become absorbed in caring for our sick kids, and our other children often don’t understand what is going on because we either don’t take the time to explain things properly, or simply don’t have that time as you’re too busy taking on the extra duties that come with having an ill child.

Ayan once drew a picture of what could happen to Julian if he exerts himself too much (he had told a teacher he saw Julian running and Julian got the shits with him over it).  It was of Julian running, then an ambulance, and then Julian – dead.  It made me stop and think about the worries that they go through every day, and that their worries may just be worse than our because we – to an extent – understand the medical side of things, what is being done to care for Julian to make sure this doesn’t happen.  All they really understand (as I did as a child) was that one day they might not have a big brother any more.  With this understanding comes the need to ‘push’ their relationship with him, sometimes forcing their attentions on him when he just wants time to himself, and at other times, tattling every chance they get.  It’s their way of getting all their love in, and protecting him (and themselves from losing him) all at the same time. 

Even after Julian’s health stabilised after his surgery in August 2011, they all still had trouble dealing with the emotional issues that came along with it.  Nigel and I were able to cope differently; we were there when he had his surgery and I was in the hospital with Julian for the whole time he was there.  We spoke to doctors, nurses and other parents to help us through the worry.  Yet, for his siblings, all they really understood was that Julian had gotten sick enough that the doctors wanted to operate on his heart to stop him dying.  They didn’t see him for a week, and when he came home he could barely walk up the stairs, and for another two weeks, had no energy to play with him.  You could almost see the wheels turning in their little heads.  I thought he was going to be better when he came home?  After he had recovered, they took on what they thought was their job keeping him safe.  “Mum!  Julian’s puffed!” became a common shout in our house for months afterwards.

I don’t think that we were remiss in our parenting during this time, but our thoughts were far more focused on Julian and his surgery than they were on what might be going through their heads as well.  We had sat them down before his surgery, and explained as much as we thought they could understand, but we didn’t really think about what would happen when he came home.  So, here are a few things we came up with once we realised the kinds of worries they were also feeling:

*  Keep siblings informed of their brother/sister’s medical condition – and be honest!  They need as much information as you do.
*  Make sure you tell them – and that they understand – that it’s not their fault their brother/sister got sick.  Trust me, they do go through stages when they blame themselves.  
*  If their brother/sister is in hospital for any length of time, take them to visit.  It will strengthen their relationship, and lets both your ill child and your healthy children know that each cares for the other.
*  Let them know that it’s okay to feel angry, sad, scared, worried, because you feel that way too.  It lets them know that you understand how they feel, and that they can talk to you about anything.
*  Answer their questions.  Why does Julian have to take tablets?  Why does Julian have to see the doctors a lot?  How come Julian can’t run like we do?  Be honest in your answers, and don’t ‘baby talk’ them.
*  Find alternatives for family outings.  Obviously, Julian couldn’t handle scrambling over rocks and steep climbs, but he can do an easy bushwalk if we take it slow (luckily, Nigel photographs mushrooms so we always take a bushwalk slowly), and walks along the beach are another thing we can enjoy as a family. 
*  One on one time!  I can’t stress how important this is.  So much of your time can be taken up with your ill child, and siblings need to be reminded that they are just as important to you and that you love them just as much as always.  If there is something they want to do that they know their brother/sister can’t do, take them by themselves.  They shouldn’t have to miss out on things they enjoy because their brother/sister can’t do it – and make a point of reminding your ill child of this also.
*  If they are attending school, kindy or daycare, make sure you let their teacher’s know what is going on, especially if their brother/sister is in hospital or sicker than usual.  It’s just as important of informing your ill child’s teacher.
*  If you need someone to look after your other children because of hospital appointments or emergencies, make sure you ask someone they all know well.
*  Don’t talk down their concerns.  Let them tell you how they feel, and more importantly, listen properly not with half your attention elsewhere.
*  Make sure you don’t compare your ‘normal’ children to your sick child when they are sick themselves.  ‘Come on, if Julian doesn’t cry when he has a needle, then neither should you.’
*  Be just as encouraging and enthusiastic about their achievements as you would your sick child.  I’m looking forward to dancing with Ayan and Boey at their Grade 7 graduation and watching Nigel dance with Ella-Shae just as much as I looked forward to dancing with Julian at his. 



One of the most important things you need to realise as a parent is that you will forget to do each and every one of these points.  Writing them out just made me realise how often I forget them myself.  Don’t beat yourself up over it, you’re only human and sometimes, life can just simply get too hectic for you to remember everything for everyone all at once.


“The only rock I know that stays steady, the only institution I know that works is the family.” - Lee Iacocca

Thursday 21 February 2013

These 3 Charities have our hearts!


‘Tis not enough to help the feeble up, but to support them after. - William Shakespeare


During our journey with Julian’s condition, our family has been so very fortunate to have been the recipient of much-needed help from, and through, certain charities that have helped us distance ourselves from the never ending worries that go hand-in-hand when your child is sick.

Thank you from The Summers Family to Precious Hearts, HeartKids Qld and the Make-A-Wish Foundation.  You have each brought happiness, smiles and laughter to a family that sometimes has troubling finding reasons to do so.

Each one of these charities, in their own way, has made a huge difference in our family’s life.  Supporting us emotionally, helping to give us memories beyond our imagination, and giving some distraction and a boost in an otherwise emotionally exhausting time.  And the people we have been lucky enough to meet on our journey have changed our lives in too many ways to count.  Some have given us strength and some have shown us the different paths available for us to choose.



Precious Hearts


Julian was the recipient of a Precious Hearts Care Package when he had his surgery in August 2011.  Believe me when I say that this care package made his stay in hospital easier on us both!

Precious Hearts is a charity that was formed to provide children recovering from heart surgery with care packages.  After open heart surgery, children are very restricted, their ability to move is quite limited and their hospitilisation can last as little as a week or as long as several months. 

Precious Hearts provides these children with care packages to lift their spirits and help them pass the long, inactive days that follow.  Each care package is age appropriate and filled with items such as colouring and activity books, pencils, textas, crayons, story books, puzzles, craft projects . . . the list goes on and on.  They cater for children from birth to 16 years of age. 

The Care Package Program runs at The Children’s Hospital Westmead, where there are close to 1000 heart procedures performed each year.  These care packages are kept on the cardiac ward and given to children by the nursing staff when they return from the intensive care unit after surgery.  Precious Hearts also send many care packages each week to children in hospitals all over Australia, so if your child, or a child you know, is having heart surgery, please contact Precious Hearts and let them know!

An astonishing amount of hours go into running a charity, and Precious Hearts is run completely by volunteers, something they are very proud of!  It is run by people who have all been personally affected by Congenital Heart Disease and are driven by their wish to help others in the same situation.  No one at Precious Hearts is paid for the services.  They work hard to raise funds all year round, and donations of items to go into their care packages are always needed and appreciated!  Precious Hearts would love to receive anything that would keep a child occupied in hospital. 

Donations can be sent to:  Precious Hearts, P.O. Box 707, Richmond, NSW, 2753.  You can also contact Precious Hearts via their Facebook page: https://www.facebook.com/preciousheartspage?fref=ts


HeartKids Qld



I first became aware of HeartKids Qld when a Statewide email was sent out through Qld Police, where I was working at the time, just a few months before Julian was diagnosed.  Michael L had sent out an email asking people to support HeartKids Qld by purchasing one of their financial year calendars.  About a month after Julian was diagnosed, when it had all kicked in and settled down a bit, I remembered the email and contacted Michael, asking if he could pass on any contact information to me.  He emailed me back (I really wish I had printed it out and kept it now that I’m not working for Qld Police anymore!) and that night, his beautiful wife, Charmaine L called us at home, lending a shoulder to cry on, an ear to bend and some extremely helpful advice for getting through the diagnosis and looking past it to the future.  Thank you so much, Michael and Charmaine, for your support to complete strangers in their time of need.  I’m sure we haven’t been the sole recipients of your generosity!  Nigel and I later became closely involved with HeartKids QLD, becoming the official photographers of their financial year calendars, and a very good friend of ours (and father of a HeartKid himself) Steve K, joined us one year in helping us with the creation of the calendar itself. Over a 3 year period we were so fortunate to have met so many wonderful children and their families.  Thanks to Paige R, her family, and Darren Pratt (then President of HKQ, who has sadly passed away), Julian received a laptop when he was 7 years old to help make sure he settled down a bit and stopped his persistent efforts to extend himself physically.  Wonderful people, and a wonderful support base for parents who have been hit with this horrible condition.

HeartKids Qld Inc is a not for profit organisation, which has grown from a small group of parents meeting informally for support (known then as “Heart to Heart” Cardiac Support Group Inc), to representing and servicing the needs of HeartKids and their families throughout Queensland and Northern New South Wales.  They strive to raise Awareness, and provide Advocacy and Support to families.  HeartKids collectively pools their resources on a national level to undertake research in regards to Childhood Heart Disease.  All money raised goes towards enhancing the lives of all Heart Children and their families, through information, and providing support and understanding.  Everyone involved with HeartKids Qld knows what it’s like to be faced with the distressing news that their child has a heart condition, whether it is congenital or acquired, and all members work on a voluntary basis.

Everyone copes with this information differently, but it does help to speak with other people who have been in similar situations and can give both advice and support when it’s needed.  HeartKids Qld believes that parents who are well informed and supported are better able to cope with the day to day management of their child and their condition, and they recognise that the number of questions that need to be asked are not always medical.  On a parent to parent basis, they try to help find workable solutions to problems, and help parents gain confidence in their ability to cope.  



In mid-2012, HeartKids Qld commenced their “Thank You Angels” Project, in collaboration with “O’Shea”.  The objective of the project was to develop an awareness campaign for 2013, incorporating O’Shea’s single ‘Thank You Angels’, which is dedicated in part to the HeartKids.  You may recognise the advertisement that is currently showing on our televisions now, click here to see it now:  

If you would like to know how you can help HeartKids Qld, or would just like to donate, please click this link:   https://www.heartkidsqld.org.au/how-you-can-help/.  Of course, HeartKids Qld also has their Facebook page, which is a community of heart kids, parents, siblings, friends and anyone interested in this cause and helping to raise awareness and help find a cure - https://www.facebook.com/HeartKidsQLD?ref=ts&fref=ts.


Make-A-Wish Australia

Receiving his Wish with Nitro at White Water World
In 2007, Julian had a wish to go to Canada to make a snowman, a snow angel and have a snow ball fight.  Unfortunately, he was too young to travel overseas, and his IPAH did not allow for long plane flights either.  So, Make-A-Wish Australia sent our family to Perisher for 8 days of snowman building, snow ball fights, skiing lessons, love, laughter and fun.  


Make-A-Wish Australia grants wishes to children and young people who have life-threatening medical conditions, and in doing so, enriches their lives with hope, laughter and joy.  Make-A-Wish Australia is a national charity with over 1,100 volunteers and 57 branches, and although Make-A-Wish is a worldwide charity, all money raised in Australia goes towards granting wishes to children living in Australia.  Since it began in Australia, they have granted more than 7,000 wishes; worldwide Make-A-Wish has granted more than 270,000 wishes.

Wish granted!
All children who are recipients of a wish have a life-threatening medical condition, and although this covers a variety of illnesses, approximately 60% of these children have some form of cancer.  Wish types fall into four different categories; ‘I wish to be’, ‘I wish to go’, ‘I wish to meet’ and ‘I wish to have’.  Most common of these are wishes for computers, cubby houses and trips to the Gold Coast.

It's fun to fall on snow!
There are so many ways you could help Make-A-Wish Australia grant a wish for a child with a life-threatening medical condition.  You can make a donation online by clicking on this link: https://www.makeawish.org.au/netcommunity/sslpage.aspx?pid=1706, become a volunteer: http://www.makeawish.org.au/netcommunity/page.aspx?pid=1648, or you could talk your boss into becoming a corporate sponser: http://www.makeawish.org.au/netcommunity/page.aspx?pid=1682. 

 If you want to help sooner, rather than later, Make-A-Wish Australia is running a fundraising campaign called “Wish Day” on Friday 22nd March, 2013.   Wear what you wish and raise money to help make wishes come true and make a difference for seriously ill children.  If you would like to get involved in “Wish Day”, follow this link and have some fun with it!  http://www.makeawish.org.au/netcommunity/page.aspx?pid=1844


If you know of anyone who could benefit from any of these three charities, please let them know what is available to them. 

Wednesday 13 February 2013

HeartKids Qld Valentines Day Fundraiser



‘Have a Heart’ this Valentine’s Day and donate to HeartKids Qld’s ‘Have a Heart’ Campaign!

This Valentine’s Day, 6 babies will be born with Congenital Heart Disease (CHD) in Australia, and in the same week, 4 young Australians will die from CHD.  So, this Valentine’s Day, donate your chocolate budget to HeartKids Qld to help support families during their struggle with this tragic disease and help find a cure for CHD!  In return, you will receive a beautiful card to give to your Valentine, letting them know of your decision to help give the gift of life.

This is what your donation can help give a HeartKid:

$10 Comfort Food – A $10 donation will provide an evening meal for a parent while their HeartKid is in hospital.
$25 Care Package – A $25 donation will supply the family of a regional HeartKid with a care bag of essentials for emergencies.
$40 Calm Kit – A $40 donation will supply a HeartKid with a play therapy tool kit providing distraction techniques and pain management strategies for a HeartKid and their parent.

Please, ‘Have a Heart’ and donate now to HeartKids Qld this Valentine’s Day - http://www.heartkidsqld.org.au/have-a-heart/