I knew about this field trip from the beginning of school and off and on throughout the year, I caught myself wondering, "How is this going to work? Can he walk the entire zoo? What if he can't?" In all honesty, I didn't want to be a volunteer for this trip because my experience as a parent of a heart kid can be very different from others'. It's not as easy for me to just tag along, enjoying the moment. I get caught up in thinking and analyzing and overthinking and then analyzing from a different angle.
And all of that did happen, but you know what? There were also a lot of moments I did enjoy. A lot of moments where Luke was just one of the kids and except for the trek up about fifty steps back to the bus at the end of the trip, Luke made it. He walked the entire zoo with his buddies. I could tell at one point, during the long walk to the polar bears, he was petering out a little bit. I offered him a piggy back and he looked at me like I was nuts. "None of my other friends are getting carried!" Okay then.
So when he saw all those steps back up to the bus, he looked at me and said, "Okay. I'll have that piggy back now." Knows his limits, that one. The great thing was, no one even really noticed the piggy back and definitely no one said anything. It made my mama heart feel even better when I heard a couple of the girls behind us say, "When I get home I am going to do NOTHING but sit on my couch! My legs are tiiired!"
Part of this crazy decision making process to determine when Luke's next surgery should be is a continual check-in of the question, "How is Luke's quality of life? How much does his three chambered heart impair him?"
On a day like this:
|Can you find Luke?|
We can rest assured that this kid is living life. And in the areas where his one ventricle doesn't allow him as much stamina as his friends, we have seen over and over his capability to adapt and compensate really, really well.
All of Luke's data, from his recent cath and MRI, his latest echo, clinical notes and surgical notes, has all been sent over to CHOP by our cardiologist. I am anxiously waiting to hear their thoughts on our boy. I can't imagine anything they say or see will cause us to move forward with the Fontan this summer, but I guess one thing you learn in this journey is that the unexpected should be expected.
While we wait, we will enjoy two and half months of SUMMER. School let out last Thursday and we have days of swimming at the lake, hanging out at daddy's camp, S'mores, neighborhood water fights and theater camp to look forward to.
I was definitely the sad one to see school end. I realize how ridiculously spoiled I was this year to have such a dear family friend teach Luke. It was a year where I never once had to worry about how well Luke was being cared for. And he knew it, too. He blossomed this year, as a student and as a leader in the classroom. The foundation Tam laid for him, a foundation of confidence, is priceless to this mama. He loves school and loves being at Dad's school. Best decision we ever made.
Second grade, here he comes!