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I lie every day -- and I'm not sorry

Back in April, YummyMummyClub.ca held a writing contest based on the theme, Truth or Lies: What I've Never Said Before.   This was my 600 word submission:

I lie to my son every day.  I teach my sons that lying is wrong, but I don’t tell them that sometimes we need to finesse the truth and be selective with the details we share.  I know it’s all the same, which makes me a hypocrite -- but I’m not sorry.

For the past four years, I have told my son that his heart is special.  So special that he needs to receive blood thinning injections twice daily, along with various other medications.  So special that he needs to visit SickKids monthly for blood tests and every three months, so the doctors can check his heart.  I don’t tell him that the coronary arteries that supply blood to his heart muscles have giant aneurysms, as a result of him having Kawasaki disease at the age of three.

Once a year, I tell Isaiah that he needs to go for his “special sleep” at the hospital.  He handles it like a champ and enjoys choosing the flavour for the sleep mask and laughs at me when I put on the “marshmallow suit” to take him into the cath lab.  I don’t tell him that I am scared to death of what could happen while he is in there, or what results the doctors will share with me when the tests are complete.

I tell my son that the scar that runs down his chest is from the special sleep he had when he stayed in the hospital for many days.  He does not recall much about that time, except receiving the “wow” bead for his bravery necklace, because he was such a good patient while they pulled the drainage tubes out of his chest. I don’t tell him that we allowed the doctors to open up his chest and stop his heart, so they could perform a 10-hour long, double coronary artery bypass operation when he was four years old. 

I tell Isaiah that he is still too young to go downhill skiing with his dad and older brother, so he and I will do cross-country skiing instead.  I praise his amazing spiral throw, but suggest playing tennis instead of taking up football.  I don’t tell him that since he is on multiple blood thinners, he is not supposed to be playing contact sports or engaging in activities that could result in a head or internal injury, as these could be fatal.

Isaiah is older and smarter now.  He is starting to notice the inconsistencies in my stories.  Recently, he asked me why he needs to take all his medications. I responded that they help his heart work better.  He then astutely asked, “Why would my heart need help if it’s special?”  I know that one day the lies, omissions and manipulation of the truth will have to stop.  One day, he will need to know the details of how Kawasaki disease turned the healthy heart he was born with, into one that is constantly at risk of forming blood clots and areas of calcification that could result in a heart attack.  But today is not that day.  I am confident that Isaiah is strong enough to handle the truth when it is revealed, but for now I choose to bend the facts and discreetly steer his choices in order to avoid using words like “can’t” and “shouldn’t.”  I want my son to feel that he is capable of doing all that he wants to achieve.  I do not want his acquired heart disease to define him.  So, I lie to my son every day -- and I’m not sorry.

When I first became a parent to an extremely fussy and colicky baby, I quickly realized that despite what the baby books, written by so-called experts, say and despite the well-meaning advice from older relatives who have been parents many times over, families need to do what is best for them, their children and their current situation.  Our decision to "lie" is what we have determined is right for our son at this moment in time.  I know there will be many people who disagree with the approach we have taken with Isaiah and would argue he needs to be more aware of his condition, so that he can "deal with it" and be cognizant of the dangers he is faced with.  What people need to remember is that Isaiah is seven. Seven years young.  He is going to run and jump and trip and fall, no matter how many times you tell him to be careful.  Because that's what seven year olds do.  Why would I burden him with thoughts of internal bleeding and the possibility of his heart stopping?  These are not things a seven year needs to worry about every day, especially when his parents already do enough worrying for him.  Although, this is Isaiah's reality, he will deal with it when we feel he is ready.  In the meantime, we have equipped the adults around him, who are in charge of his care, with the necessary information to cope with issues that may arise.  We do as much as possible to keep Isaiah safe and healthy.

This is not to say that Isaiah is completely oblivious to his condition and the care he requires.  He is the first to remind me when the clock has passed 8:30 and I have not administered his injection.  He is quick to point out when I have erroneously given him one of his evening pills in the morning.  Isaiah knows to tell us if he has any pains in his chest area and can rate his pain on a scale from one to ten.  He is self aware without knowing the details of why he needs to be, and for now, that's fine by me.

It is actually quite ironic.  I try to raise Kawasaki disease awareness as much as possible, am a proud member of Kawasaki Disease Canada, and Isaiah has heard the term "Kawasaki disease" countless times, but yet he still does not know that this disease changed his life forever.  But does it really matter right now?  Isaiah does not remember what his life was like before KD and detailing for him the illness that gave him his "special heart" will not change his reality.  For now, he is happy to be a "regular" seven year old, but with a heart that requires a little extra attention.  He is happy just to be Isaiah.  So for now, I will continue to "lie," because why would I want to mess with that?

Isaiah checking out the model heart at one of his heart clinic visits.
[Side note: YummyMummyClub.ca ran a great Kawasaki disease article in recognition of Kawasaki Disease Awareness Day in January 2016.  Isaiah was mentioned, along with the children of two of my fellow Kawasaki Disease Canada board members. You can read the article here. ]

Comments

  1. You must do what you think is right for him regardless of what others say. We got lucky and our Safiya has no heart complications. I read about Isaiah's surgery back when Saf had KD or not long afterwards. If my recollection is correct one of the bypass surgeries was successful but the other not. I hope things improve for him and he stays safe and as well as he can be.

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