Laurie

Step by Step

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When you begin the journey of parenthood you are in it alone, with a baby growing inside you. You may have a partner but the journey of discovery is really something that you can only share with them. You carry him and feel him kicking in ways that your partner can’t feel or understand.

In the hours after Josh was born, I lay in the OR recovery room touching my empty womb and wondering if he was still alive. He wasn’t even in the same hospital with me anymore, he had already been taken to Sick Kids across the street. From there it was what can only be described as a journey, a beautiful, scary, deadly journey. Every single appointment, every single needle, surgery, procedure, MRI, ER visit, clinic visit, question, every single tear, it was on me to help make it better. I have a husband, a good husband and father but it was me who took over the medical care of Josh (and I did it because I wouldn’t have it any other way).

Last year I was asked to walk in the walk for life event that the Cardiac Health Foundation of Canada runs every year. I joined a team but I didn’t really know anyone so I found myself on the start line alone, and I walked, alone. However, as I walked I found myself on a journey of remembering, of healing. I had promised my donors that if I reached a certain goal I would do 10km instead of the 5 I had been meant to do; and the first few kilometers were fairly easy going, I walked and thought back, sometimes the memories were hard and sometimes they made me smile. The further I got the more tired I was but I couldn’t stop, step after step I continued down the path and I realized that it was similar to our lives. We get tired, but we can’t stop, we have someone counting on us in ways that they count on no one else. As I got to the 8km mark I began to pick up speed and in honor of Joshua’s strength I ran the last 2 km. Running isn’t my thing, I hate it for many reasons, but I ran because I was now on a journey too, one of healing. When I crossed the finish line I had tears in my eyes, sweat everywhere, and so much joy inside at both finishing the race I had set for myself but also knowing that I was doing this alone, for Josh. As the parent of a child with a congenital heart defect it can sometimes feel like we are alone, sometimes we feel like there is no one that understands what we are going through. Last year I was on a team of survivors, they were awesome, but they have different stories, different journeys.  This year, I am so excited that we will walk with the Cardiac Kids, we will stand tall together, step by step on a journey not one of us wanted but we are here anyway. This year, I won’t be walking alone, I will walking beside people who fully understand life with CHD from a parents perspective and I have to tell you that I am so excited, to meet all of you and to raise money and awareness with you. I will see you in May with your walking shoes on!

Laurie

Interested in joining Team Cardiac Kids in this year’s Walk of Life? Click here to join our team.

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What’s Next?

As parents who love our kids it is our job to ensure that they have the best possible care. We give them the medications, we take them to every appointment, we hold their hand for every blood draw, we sign consent for every surgery, we shed tears with them when it hurts, we hug them when they are scared, we seek therapy for them when they need added help. In every way we seek to make their lives as great as possible, we strive to give them as normal a childhood as possible; sometimes we succeed and sometimes as hard as we try to we have to admit defeat.

I am generally a fairly hopeful person, it wasn’t until Joshua’s third surgery that it really struck me. There is no cure for what ails my son. It doesn’t matter what I do, I will never be able to fix his heart. It was a bitter pill to swallow, one that still has a bitter after taste years later. As I wrestled with the idea of Josh always having a heart defect I also began to research what his future will look like. I wanted to be as educated as possible, what I learned was disturbing but not hopeless.

In the 1950’s and 60’s a child born with a congenital heart defect had a twenty percent chance of surviving to adulthood. Fortunately, today, ninety to ninety-five percent of children born with a CHD survive. The growing number of survivors is leaving us with a beautiful yet unique problem.  Where we have never before needed an adult care system, we now have a desperate and constantly growing need for specialized cardiologists in the field of Congenital Heart Defects.

When Joshua turns 18 he will leave the safety of his paediatric hospital and enter an unknown adult world of medicine that is not ready for him. He will leave Sick Kids and be met with new doctors who may not be specialists in the world of congenital heart defects. As a parent I have learned a great deal about the medical system from pre-natal, through to pediatrics and now realize what the adult care system is currently facing in terms of larger numbers of survivors, a lack of specialized doctors and health care providers.

But what would happen if there were a place where adult CHD patients could all be treated with equal care, equal value–just one all encompassing system such as they already receive as kids? What would happen if we had a place for all CHD patients—baby, child or adult? What would happen if we went to one place for prenatal care, paediatric care and then adult care? What if Josh, who has always been followed by one specialized cardiologist, whose surgeries were always done by the same surgeon, was followed throughout his life by the same institute, the same care providers?

I see all the problems that face Josh and survivors like him, I see the lack of specialists in this field, I see the lack of education for the patients leaving paediatrics, I see the cracks in the system that are just waiting for kids like Joshua to fall through and I see a deep need for change. As parents it is our job to take care of our kids, to help them in any way that we can; I cannot cure my son, I can’t fix his broken heart, but I can do everything in my power to see that his future is as secure as possible. I can make sure I tell everyone who will listen about this silent killer who stalks our kids. I can do whatever is necessary to see a place like this dream institute can become a reality.

This is not so farfetched a dream. It only needs an action plan. It needs people like you, people with a voice, people who care about the future of our children, people with the power and will to make things happen, to ensure change.

Laurie

Laurie is a regular blogger for Cardiac Kids. To read more about her an her son Josh click here 

Be sure to check back next week for a post from Crystal

Brothers In Arms

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Someone once asked me what scares me the most about being the mother of a child with a heart defect. I remember that, at the time, I didn’t have a thoughtful response. I have a lot of fears when it comes to Josh but what’s my biggest? Over the years I have thought about that a lot and the answer that comes back again and again is a response you will probably hear from all Moms, not just the Moms of sick kids.

I fear failing my boys, I fear that when they grow up they will not know the depth of my love for them, or that somehow my parenting them could hurt them. Too often I feel that I am not up to the task set before me. Sometimes I look at these two beautiful creations and I wonder why God saw fit to make me their Mom?

Last year we had to focus a lot on Josh and his numerous appointments, his cath. procedure and his surgery and then all the therapies and as I did I began to see something happening to my youngest son, Kaleb. He was only 2/3 at the time, he didn’t understand what was happening to his brother, he didn’t get why there was a cloud over the house. What he saw, was the amount of time he spent with my parents-in-law while I took Josh to his appointments, what he heard was the thousands of conversations about Josh. A few months ago he had a severe asthma attack and I had to take him to the ER at Sick Kids, and instead of being scared Kaleb was so excited, he was singing in the back of the car about going to this hospital as if it was Disney world or something. He honestly thought I was taking Josh on fun dates every time we went to the hospital; that ‘doctor’ was like the ‘Mickey Mouse’ of Sick Kids. The last few years have been a learning experience for me, as Mom and as a CHD advocate. My littlest son was suffering just as much as us, and yet worse because he didn’t really understand any of it.

There is no one left untouched in a family struck by CHD, but too often the ones forgotten are the siblings. The ones who love their siblings unconditionally, and yet are not included in the process and appointments. They aren’t given all the information because we want to protect them, they have to watch the most important people in their lives struggle with fears, worries, sadness and there isn’t much they can do, and not much they understand. They also struggle because the attention is all on the brother/sister. They begin to feel second best, they question if they are loved as equally by their Mom or Dad, they feel guilt over their anger towards their brother/sister because deep down they know it’s not their fault but they are too young to fully get it. They struggle to figure out where they fit in the family, maybe they act out as they try to figure out their role.

The list can go on and on. We saw all of these things in Kaleb, our sweet and compassionate little boy. He was so desperate for our love and attention and as hard as we tried, most weeks CHD had different plans for my time. Since Josh’s surgery I have been spending as much quality time with Kaleb as I can, throwing snuggles and kisses at him so often that he giggles and runs when he sees it coming. One day, back in March I said ‘guess what?’ and he of course responded with ‘What?’ and I snuggled his neck and said ‘I love you’. He looked up me and said ‘Why do you say that all day long?’ but in his eyes I saw real knowledge. He knows I love him. He’s forgiven me for now, and hopefully when CHD rears it ugly head and threatens us again I will know how to make better choices, or at least Kaleb will be old enough to understand it better.

Our heart warriors and brave and heroic little people who fight with strength I have rarely seen in adults, but lets not forget their brothers and sisters in arms who fight by their side.

Laurie

Laurie is a regular blogger for Cardiac Kids. To learn more about her or read Josh’s story Click Here

Check back next week for a post from Shannon