We've religiously brought our son with congenital heart disease (CHD) to the cardiologist in regular intervals for the six years he's been alive (seven if you count the year he was in my belly when the whole thing started). It's become a ritual. For the first several years they could never get an accurate blood pressure on him and it would take several tries of torturing a baby, then later, a toddler, with that awful squeeze. Is it so important today? we would ask. And why such an archaic method; surely someone has invented an easier way to get a blood pressure on a squirmy, red-faced two year old?
But the worst part of these visits, the dark well of Griffin's condition, is the uncertainty. (I've written about that previously). His medical team was quite convinced he would need open heart surgery within the first year of his life. Every time an appointment approached I convinced myself it was time. And every visit that first year ended in, Let's wait another 1 or 2 (any random number??) months and check him again. This scenario has played out now over six years. He has not yet had the surgery we know is someday coming.
So it seems, time really does go by. Kids grow. Parents say little excruciating goodbyes: goodbye to tiny onesies, goodbye to crawling, goodbye to early childhood as they hop on the bus the first day of kindergarten.
This fall when our cardiology appointment approached, Griffin asked us about it before we mentioned it to him. When is it time to see the doctor who puts the jelly on my chest? It made me pause. He's recognizing the importance of this in his life. On the day of the appointment he looked curiously at the monitor during his echocardiogram. Is that my heart? What is that color? What is that noise? He engaged in a conversation with our doctor about blue (de-oxygenated) and red (oxygenated) blood. She told us to come back in six months and he counted out when we should make the appointment.
I felt a real shift in me that morning. Griffin is beginning to take ownership of his heart condition. I've wanted to protect him from the uncertainty and anxiety I've always felt surrounding it, but I'm realizing that we have been in this together since he was an 18 week old peanut in my belly. And he's showing me there doesn't have to be so much angst tied up in his CHD. This is his normal.
After seven years I am finally starting to peek through my CHD armor. To talk about Griffin's heart without saying, but he will need multiple surgeries throughout his life and we have no idea when we might have to pack up and leave home for a long hospital stay. I am trying to breathe into, he is doing great and there were no major changes at his last visit.
Time and perspective have allowed me this shift. We all have BIG, HARD stories in our lives. Can you open yourself to a different perspective, a new chapter in your story?