Poker faces...

Apologies for posting so much and if what I post is upsetting to any of you as that is not my intent. This blog is partly to inform others of our progress and partly to help us in processing all of this ourselves, so we will likely post more rather than less for the next little while. 

Today we are back at CHEO and started the day in cardiology. It went well, but as a person who needs visual feedback to communicate and understand what is happening, I am finding these tests stressful. All medical staff doing tests (MRI, CT, ultrasound, PET scans, etc.) are trained to be kind yet neutral. You find yourself searching their faces and their eyes for any changes or emotion that might indicate if that image they're looking at on the monitor is normal or has something unusual in it. But they all have poker faces and it tells you nothing and you are left in limbo yet again. I would be a horrible medical employee as my face can't lie.

When we were here last week for his lumbar and bone marrow punctures, he had to have a line put in for the IV and the general anaesthesia. Naturally we tried to encourage, cajole and bribe him to let them do it, to no end. Finally there was no choice but to hold him down and it took four of us. We just repeated that we loved him and hated it, but had no choice as he needed these procedures to get well. Sadly he will get used to it as time goes on (today is the fifth time so far), but what struck me at the end was that one of the poor dedicated nurses had tears in her eyes after and I could tell she was a mama and hated that part of her job. 

Happy to report that he just had the fifth line put in for the CT with minimal fussing, no kicking or screaming or crying and it was so fast! So proud of our little superhero!

Every staff member that we have encountered at CHEO so far are angels masquerading as medical staff. Their patience is incredible and their compassion is limitless. During the bad stuff they have their poker faces on, but after they praise, they comfort and they bolster patient and parents to prep us for the next battle. Their kindness has moved me to tears so many times over the last month.

I also want to say a word about poker faces of friends and acquaintances. On Friday I was at a school event with Abby and knew that a lot of parents knew our news. Some came over and simply hugged me and then left, some came by while I was talking to others and just rubbed my back or my arm as they passed me, while others were able to stay and talk and ask frank questions and give verbal support. Believe me, I understand where you are and have been there myself many times with other families in this situation. Now that I'm on this end of it, I can tell you that every gesture is appreciated and often actions speak louder than words. There are also no right words to say right now, so if you feel you can use words just be honest and say whatever you feel.  I'm not one for swearing, but my favourite reaction to the news so far was a dear friend simply responding with the F word. That said it all in that moment.  

Hugs to you all.