Isaiah's Kawasaki Disease Journey

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 ...

In the past I have often referred to our "new normal" -- the way in which we now live our lives, since Isaiah was diagnosed with coronary aneurysms.  Over time, this "new normal" has just become our normal.  Isaiah's scheduled medications are a daily reminder of his condition and Kawasaki disease seems to be ever present in my mind, but its effects have slowly faded to the background and just become part of the fabric of our lives.  I am often asked, "How is Isaiah doing?" and find myself automatically answering with a standard, "Great.  Everything is stable."  I do not feel it necessary to go into detail about Isaiah's latest test results or the health effects we deal with as a result of his multiple blood thinning medications.  In fact, I have become so effective at "glazing over" these details and get caught up in dealing with the chaos of every day life, that sometimes I actually forget what we are truly living with....unti...