27th November, 2015 – This is the birthday of our third son ‘Lincoln’.  It was such an exciting time when he met the rest of his family – his older brothers Benjamin and Jordan, along with our extended family.  We were all so eager to begin our life’s journey as a family of five.  Little did we know at the time, that Lincoln would be fighting for his life at just 9 days old.  

 

We had come home on Wednesday, were back in hospital on Saturday and on Sunday were flown by the Rescue 500 helicopter to the Lady Cilento Paediatric ICU in Brisbane where Lincoln was put on a life-saving ECMO Machine.  What a tumultuous time, we could not comprehend what was happening or whether our baby boy would survive.  The dedicated PICU team became our "home away from home" family.  The trust you place in these people to save your child, the ‘normal’ new mummy instincts you have to try and overlook.  They helped us grasp what was happening as they supported our little boy on his way back to us.

 

Having spent 135 days in the Lady Cilento Hospital with Lincoln, you meet alot of people, you observe alot of things, you see and hear the need for change. We slowly realised that IF Lincoln survived, we would be there for an extended time...the doctors did say very early on that "If Lincoln survives, this stay will be a marathon, not a sprint".

 

Unfortunately, along with all the emotional stress and the physical toll something like this takes on you, your financial position eventually has to surface. Time does not stop, our bills were still coming in and money still had to be in the bank. We needed to find out what financial assistance was available to us. 

 

Contacting Centrelink in regards to our situation was one of the most difficult, time consuming tasks we had ever encountered.  There was no immediate payment for our situation, for any parents that find themselves unexpectedly in an ICU.  It became agonisingly apparent that applying for and receiving assistance from Centrelink should be uncomplicated during this very traumatic time.  The money IS available but the arduous task of receiving it, the time consuming aspect of this process...many parents don't have the inclination; many parents don’t bother and simply return to work missing out on those precious, sometimes very last moments with their child.  Knowing how critical Lincoln was and how serious he could become, I couldn't have either of us leave his side. It was during this time my first goal became evident.  Creating a petition was the beginning of Lincolns Legacy...

 

My second goal came about a little later on our journey.  Level 4a…the Paediatric ICU…our home for 88 days has a beautiful big outside balcony. There are some chairs which allow you to sit, think, regroup, chat, cry, eat, sleep...whatever you need to do to pass the time and get through the next minute, hour and day.

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Spending alot of time out there in the fresh air and sunshine, we witnessed families praying, singing, trying to get through the horrible news they were given.  There were grieving families and at times, happy families who received fantastic news.  But mostly the mood and general feel was anxiousness, nervousness, tiredness and sadness.

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What I hope to achieve with the help of the Children's Hospital Foundation is to makeover this balcony and create something special. We strongly felt the PICU deserved to have a balcony that promoted peace and harmony for the families that have had their world turned upside down.  Some children never make it out of ICU.  For some children, this balcony is their only or their last connection to the outside world.  To be able to get lost in an oasis of serenity; to escape the intense situations that have brought them here; to escape reality…just for a little while.  This is a work in progress.  These two goals became the foundation of Lincolns' Legacy...   

 

​"I need to write this down", "I need to create a timeline"...When our admission had reached a couple of weeks, I created a FaceBook page for our baby Lincoln, to document his journey.  It was my 'journal', my 'diary' but also allowed our family and friends an insight into our lives, a comprehension of the challenges, fears and constant ups and downs that happen every day in the PICU.  

 

This page was my life-saver, my thoughts, my doubts, my crippling anxiety and constant worry were able to be expressed which enabled me to pick myself up and keep going, keep fighting, to keep my strength both emotionally and physically.  The showering of support, thoughts and prayers helped beyond words. Knowing there were people with us on our journey...knowing that, in a way, we weren't in it alone, made all the difference.

 

When Lincoln passed away on Monday the 18th April, our whole world came to a standstill.  We were in shock, devastated, absolutely shattered. Our hearts were broken into a million pieces.  "I love you, I love you, I love you...Linky Lou".  I sang this to him every single day. I told him how special he was and how much we loved and adored him.  

 

Right from the start, I knew Lincoln had a purpose, I knew that somehow someway whether my beautiful boy survived or not, we were going to commemorate his fight and ultimately his life.  Even through the overwhelming grief, we hoped that we would find the strength to make Lincolns Legacy a reality.  Lincolns death could not be in vain, I could not let this all be for nothing. We had to keep his memory alive, we had to create something for him, for us.  

 

Not long after Lincoln passed, a wonderful, kind, caring, person by the name of Loz Weribone, owner of Fresh Air Training, thoughtfully and selflessly set up a GoFundMe account which raised enough money to pay for little Lincoln’s funeral and beautiful headstone.  Wanting to do something more, Loz and Lauren Fickling, owner and director of Dancing Stars, approached us hoping to organise a combined fundraising event for our family.  This, for me, was the evolution of Lincolns Legacy....  

 

Lincolns Legacy has gained momentum – from our 88 days in the PICU wanting to create a petition for change, wanting to makeover the balcony that we considered our home…we progressed with the charitable concept of Lil Linc’s Super Fitness Fundraiser and the Mid-Year Dancing Stars Concert.  Hosting ‘Lincolns Legacy Appreciation Gala’ will provide some finality to our year, allow us some closure and allow us to celebrate Lincolns 1st birthday, his life and his legacy.  This event will additionally allow us to sincerely thank the community, our network of friends, family, strangers who have supported us through the most difficult time of our lives.  Lincolns Legacy is something Lincoln and we all should be so very proud of…