Cardiac Kids

Living in the Shadows

Instead of being a heart mom, I am  a heart sister.  Also, instead of growing up with a sibling battling congenital heart disease, for the first 5 years of his life, my brother lived an ideal and healthy childhood.  Not even the doctors could predict what his future entailed.

On October 22nd, 1993 my parents were blessed with a beautiful and healthy baby boy.  By September 1995, my parents had built up what they believed was an ideal family, with two perfectly healthy children, a son and a daughter.  They had it all. Their dream home, family, and jobs.  What could possibly go wrong?

Throughout my childhood, my brother Matt was not just my big brother.  He was also my best friend, and my role model.  I wanted to do absolutely everything he did, regardless of my age or my capabilities.  By the age of 5, my brother had begun to play soccer, and baseball, and was the happiest bundle of joy anyone had ever met.  This was all true until the summer of 1999, when he was barely able to keep up to me, his three year old sister, when we went for bike rides.  The doctors were convinced that it was just asthma, and could be easily monitored.

Like any mother would, my mom failed to stop at this simple diagnosis.  She knew in her heart that there was something more to her son’s illness than simply asthma.  How could a perfectly healthy child suddenly become so sick that his lungs, liver, and the rest of his organs stopped functioning properly?

With further investigation, the doctors diagnosed him with restrictive cardiomyopathy. Essentially, he was experiencing a severe form of heart failure, which ultimately restricted his ventricles from filling his heart with the proper amount of blood, which resulted in his heart losing its ability to circulate fresh blood to the rest of his organs.  To this day, the cause of this disease is still unknown, and the odds of being diagnosed are (with no exaggeration) one in a million.  There is no physical treatment that can cure this disease; therefore, receiving a heart transplant was, and is, the only viable option, which presented any possible hope at receiving a second chance at life.  At this point, the doctors weren’t able to tell us if he would survive another day, year, or decade, and we were told he could drop dead any minute of a heart attack with no warning at all.  The doctors weren’t even able to tell us if a match would ever be found, or if his disease could be cured.  Even if he received a transplant, there was no guarantee that he would ever return to a ‘normal’ life.   This left us with one option.  To wait and see if a donor heart would become available in time to save Matt’s life.

At this point in time, I was only 4, and completely unaware of the severity of my brother’s illness, or the risk that I could lose my big brother at any moment.  For me, it was always an adventure to go to Sick Kids with him, because every time we went, we would both receive a beanie baby (him as a reward for enduring all the tests, and me because I wanted to be just like him).  The one thing I didn’t understand was why all the little boys and girls were so sick when there were all the fun toys and games for them to play with.

If all the other children had to be pushed around in wheelchairs and hooked up to IV’s, was I going to be next? If my brother got special treatment why couldn’t I? I didn’t think there was anything wrong with him.

At least that’s what I thought, until December 19th 1999.  To this day, there isn’t a single moment I’ve forgotten from that very night.

It was around 9 o’clock in the evening when the phone rang.  No sooner did my mother come running up to my room and began packing an overnight bag for myself.  She called a number of different family friends in search of a place for me to stay the night.  I soon found my whole family in the car, and me being driven to my piano teachers house with no explanation.  At first, this seemed exciting.  It would be my first real sleepover.  Those thoughts didn’t last too long, as I spent a majority of the night in tears wondering why my family had left me, and where they were going without me.  I was still too young to know every detail about my brother’s sickness and why it required my parents to leave without taking me with them.

To my complete and utter surprise, my grandparents showed up at the doorstep the following morning.  No later did I find them driving me to their house in Ottawa, still without my parents or my brother.

Christmas soon came, and of course this is every child’s favourite holiday! Family, turkey, and of course Santa; what could go wrong?  As much as I enjoyed adding yet another Power Ranger figurine to my collection, it just wasn’t the same opening presents without my brother.  I still didn’t know where he or my father were.

Losing a family member is absolutely devastating, and I can’t imagine how my life would be without my brother.  Lucky for me, I didn’t have to, as a match was found and my brother was transplanted early in the morning on December 20th 1999.

Being the sibling of a transplant recipient (or anyone battling a life threatening illness for that matter) is one of the most challenging tasks imaginable. As I grew older, I became more and more aware of the severity of his illness.  He was put on immunosuppressant drugs to reduce the risk of his body rejecting his new heart.  But with these drugs, came illness.  He spent grade one being home schooled to reduce the risk of catching colds going around the school. To ensure I didn’t pass any disease onto him as well, I was also required to stay home from school (not that this was something I was complaining about).

Most younger siblings live their lives being the centre of the show.  My parents did their best at balancing the attention, but I’m sure you can imagine the difficulty of this when you have a sick child.  This was especially difficult during the first few years when he was required to go into Sick Kids quite regularly.  My parents did everything in their power to ensure his body didn’t go into rejection, which resulted in our family making sacrifices that slowly became second nature.  This resulted in us both being forced to grow up faster than most children, just to adhere to what became our new lifestyle.  This was especially prominent when my brother always received extra help from my parents when he missed school for regular check-ups, clinic appointments and the regular trips to Sick Kids, which soon began to occupy his childhood.  As a result, this forced me to mature faster, and learn more things on my own just to keep up with what had become a new set of standards.

Despite what seemed to be a never-ending list of appointments, he would always put up a front making it seem like he didn’t mind any of the testing he was forced to endure, and that it had instead became part of his life.  Regardless of his age, he would always come back strong and optimistic, acting as if nothing were wrong.

Although, receiving a transplant seems to be the worst thing to happen in the world, it also provided us with many opportunities most families would never have a chance to encounter or be exposed to.  My brother was able to compete in both the national, and international transplant games, which allowed us to travel to Edmonton, London (Ontario), Windsor, and Australia.  We have also been exposed to a whole new community of transplantees and their families that stand as a support system letting us know that we have never been alone in this battle.  Experiencing this has provided my whole family with a new outlook on life, proving that life isn’t measured by how many days you live, but instead how you spend them.

Like any transplant family, mine has forgone a ‘regular’ lifestyle just to keep my brother alive.  To this day, almost 15 years post transplant, my brother is healthier than any doctor could have ever imagined, and surpassed any expectations set out for him.  He’s entering his fourth year studying microbiology at the University of Guelph, and has battled more in the past fifteen years, than most people face in their entire lifetime.  To this day, he is still my role model, and my respect grows for him with every new task he accomplishes.  He inspires me to persevere through even my toughest times, and it’s because of him that I have grown to be the person I am today.

Growing up in his shadow has taught me so much, and I thank him for each and every lesson I’ve learned.  He is the most selfless person I know, and with all the illness and travesty he’s faced, he knows not to fret over the small things in life, because in reality they have a miniscule effect on the greater outcome. He is a prime example that just because life may present you with roadblocks, they are in no means a reason to give up.

Ultimately, transplants are similar to running a marathon. 3 equal parts of preparation, mental toughness, and heart. Once you breakdown the mental barriers that you will in fact reach the 26.2-mile finish line; the rest of the battle is enduring the pain, and persevering right until the end. If you have enough passion and strength to fight through to the finish, the first two steps make the race that much easier.

Kathryn

Kathryn is a guest blogger for Cardiac Kids, her brother Matt has been speaking at Cardiac Kids events since he was a young teenager. Kathryn has become more involved with the charity as she has grown, volunteering at events to show support. Kathryn will be working with Cardiac Kids in 2014/2015 as a sibling mentor.  

Check back next week for a post from Laurie

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Welcome

Welcome to the newly created Cardiac Kids Blog and thanks for stopping by.

This blog was created with the aim of connecting heart families around the world, as well as raising awareness for congenital heart disease, the most common birth defect, affecting 1 in 100 children worldwide. The authors of this blog are a group of moms, each with their own unique story, but with one very important thing in common, they are all parents of children with serious and complex congenital heart defects. I encourage you to take a moment to check out the “Heart Moms” section of this site to read each of their bios and learn a little bit about who they are. Through the pages of this blog, they will be sharing their lives and their stories, you will get to know them and their families. If you are a heart family, hopefully reading this blog will allow you the opportunity to connect with families facing similar challenges, to learn and share, and most importantly to know that you are not alone. If you are not a heart family, thank you for your interest and I hope you will continue to visit, read and understand the many challenges faced by these incredibly courageous families, and hopefully join us in spreading the very important message of awareness.

Check back regularly for posts from each of the moms, we will try our best to post each week and keep you entertained. Feel free to share this blog with your friends and family and to comment with questions or words of encouragement.

Meghan
Cardiac Kids Director