This week has been a roller coaster of emotions…Last Friday, during my “Yes Day”, I spent some time reflecting on what’s been going on for us recently and ended up writing for this week’s blog. Below is what I wrote one week ago.
I find the days leading up to one of Kane’s big medical appointments and the days leading up to the anniversary of my dad’s passing generate similar thoughts and feelings. The “what ifs” can be overwhelming. The grief and sadness about what “could have been” can be debilitating. I’m usually pretty good at the positive stuff, but I definitely struggle with anxiety, particularly around what will happen with Kane. My dad already wrote his own ending, whether it was in his control or not, and now it’s up to the survivors of his suicide to manage their emotions and their reactions to those emotions.
I’m usually pretty good at self-care, both through exercise and taking time for myself, but I struggle with asking for help and setting boundaries. I’m really good at bottling it all up until something explodes (think Mavrage).
Many of you may not know that we are waiting to hear about when Kane will have another heart surgery. Not whether he will have one, but when. We have been watching Kane get more breathless with activity and need to take more breaks, we can hear the change in the way his heart beats. The other day at Jiu Jitsu Kane said to his instructor, “That’s hard for me.” Now, I don’t know if the movement was difficult for his body to perform or if it made him tired or if he just didn’t want to do it. And that breaks my heart. In a strange way, I wish it was just that he didn’t want to do it. Though I know that is likely not the reality.
This year my dad’s anniversary and Kane’s cardiology appointment fall within the same week. This week could be a real doozy.
On Tuesday, my dad’s anniversary came and went. I spent time with kids, but I also made sure to take some time for myself, with a hot yoga session and peer mentoring at the Stollery. This is not as selfless as it seems. Peer mentoring allows me to get out of my own head and helps me to shift my perspective and get grounded on what is happening medically for us. Peer mentoring, and any other activity where I get to take time for myself, also means I am depending more on others, like Harrison, to be there for Kane and Mav. I am lucky that I have that option and I appreciate how much I can depend on Harrison for these mental health breaks.
Thursday was Kane’s cardiology appointment. The staff of 4C did all of their usual tests; height, weight, blood pressure, electrocardiogram, echocardiogram. And Kane was a trooper through all of it. His least favourite part is the stickers they use for the ECG and he absolutely hates getting them peeled off, but this time he pulled them off himself and that seemed to be a better strategy for him.
While we were there we also enrolled in a research study. The study is looking at physical activity levels of cardiac kids from ages 5-17. Kane is now the owner of a pedometer that he will be wearing for one week out of the month for the next six months. I am really interested to see what we learn about his physical activity. The research assistant was asking Kane quite a few questions about gym class at school, recess activities and whether he likes active games. A few of Kane’s answers surprised me, but for the most part they were what I expected. Though my favourite response was when she asked Kane “Can other kids do things that you can’t do?” His response was an emphatic “NO, I can do everything!” My heart swelled. Turns out I needed to hear him say that. Especially with the discussions that came next.
Long story short: Kane is going for a 3D echo next Friday. On the 22nd his case will be presented to the cardiac surgeons for review. Kane’s cardiologist feels that with his scoliosis, and the possibility of a spine surgery, it is better to repair his subaortic fibromuscular ridge and his quadricuspid aortic valve sooner rather than later.
So now we wait.
And begin to come to terms with the new information we have.
Oh and share Kane’s story during the Corus Radiothon in support of the Stollery on Wednesday afternoon.