I always find it amazing that words hold as much power as they do, how a simple sentence can throw you into a random spin downwards or up depending not necessarily on the actual words but on how you choose to interpret them. I can sift through a sentence and hear someone affirm me or hurt me depending on how I choose to view their intentions, I can hear a word or two and choose to hear those over the sentence as a whole and choose to worry over something that maybe doesn’t need worry.
Today I had a call from Sick Kids and our cardiologist… instead of waiting the six months as was intended she now has some concerns that she wants addressed and assessed tomorrow. (A non clinic day). I hear these words and I could think to myself ‘she is being thorough and wants to cross T’s and dot Is but instead, my heart races at the sound of her voice, even seeing her name on my phone has my sweat glands on alert and the words… all the possible case scenario’s race through my mind. Regardless of the fact that it could very well be nothing immediate, or earth shattering, that’s is not what I fear. Tell me not worry and I ask you how?! How do I not worry? How do I wait an hour let alone a 17.5 hours. I want answers, I won’t relax until I get those answers and as I speak to the nurse and Josh listens I can feel his unrest, I see his face scrunch up and tears start to well up. It breaks my heart to know that the name of his Dr, now brings fear, unrest and upset to his poor little ears. When will this little boy know normalcy? Will he know it?
Do I need to always feel the sick gut feeling at the sight of Sick Kids, or even the signs adorning most bus stops these days ‘Im a Sick Kids kid’ in which every time I see it I see Josh’s face and know it’s not over, will never really be over. There is no cure for CHD, and only last week I spoke about the hope that we have in the research they are doing. It’s true… I know in my head what my heart hasn’t gotten yet. I still feel fear, I still worry, I still watch him play and wonder if that bomb inside his chest will go off one day without warning. I still watch him getting tired and wonder if it’s a normal tired or a heart failure tired, I still get phone calls asking me to bring him in and still get that sick feeling in my gut when I do. What if I miss something vital? What if I don’t see something significant? Hope or not, faith or not, I am his Mom and I am terrified that one day the options will run out, our time with him will come to an end…
All of this may be for naught, we could get there in the morning and get a good test result… I do know that intellectually… but it won’t stop the worry tonight. It won’t stop me looking for the early signs and symptoms of problems in all the little things he does. The day he won’t eat his lunch it will cross my mind if he is showing signs of heart failure, if he wants to rest, heart failure? Grumpy? Heart failure? Not going to the bathroom as much… heart failure? No, the worry won’t end, it changes, becomes less acute but it will never end, just as his heart won’t fully mend, and knowing this… just makes me feel very tired.