It’s an odd title … I know. I can explain.
I’ve been referring to this 30 day project as a “story.” That’s not really true. Storys have an ending. I’m not sure we have arrived at our ending yet.
There have been several times along the road that I thought we were at the end. When we left the hospital the first time I thought we had reached an ending. I knew we had physical therapy and occupational therapy and follow-up visits but it felt like it was “over.”
That didn’t last long because once they analyzed the tumor they determined it was a Stage 2 tumor (not bad but I was hoping for Stage 1). It was also rare and only recently discovered (actually not discovered but sub-categorized from another tumor group). Talking with Dr. Young he didn’t have a lot of information about the new type of tumor and I remember him saying that it had been discovered 7 years ago and so far only one patient had lived the entire 7 years. That was NOT reassuring news at all. I remember sitting out in the garage listening to all this information from him thinking “but I thought we were done, you removed the tumor.” It was supposed to be over.
Shortly after Dr. Young called I got a call from “This is Jessica…uh Dr. Goodman.” Luckily she had a LOT of information about this newly discovered/categorized tumor. However Teagan didn’t fit the typical characteristics because most kids diagnosed with it were younger than 2 and the tumor was located in a different part of the brain than where hers was. The fact that the majority of the tumor was removed was also in her favor. Majority being all but 2 centimeters. 2 centimeters being the size of this —–. It made me feel better, but my illusion of an “end” was shattered.
It wasn’t the first time my illusion of an end was shattered. It would be shattered again after a 2nd surgery and again after chemo. I have been looking for and “end” and I’ve finally come to the conclusion that there isn’t one – yet.
For 5 years I’ve been waiting for some magical ending. Something that would just make everything in our life go back to “normal.” We have what I like to call the “new normal.” The old normal is what most everyone in the world has, 2 healthy kids with issues like homework and school friends and sports and what they plan on doing for vacation next year. Our “new normal” has all those things but there is an underlying layer. A layer that involves us knowing that those things aren’t as important as they once seemed. And a layer that now involves still going for regular MRI’s and blood work and searching for new surgeries or therapies that might assist a hand and wrist that still doesn’t work the way it’s supposed to. Keeping an eye out for anything that might lead us to believe that the tumor has come back or that she is experiencing some kind late effect of chemo.
We might be getting closer to an “end” though. This year when meeting with her teachers – also part of the new normal because she is required to have an Individualized Education Plan due to a “health issue” – they talked about how she is a leader in her class and that she is always seen with not one but two friends walking down the hallway and at recess and at lunch. And that she does things like climb up on the monkey bars and gets as far out as she can with her right arm and swings as hard as she can before she lets go because she knows she can’t use her left arm to make it across but she wants to go as far as the other kids.
When we left the meeting last week Dave said “Maybe this is why this all happened. Maybe she has big things in store for her that we can’t even see yet.” My guess is that he’s probably right. But I’m still not there yet. Correction…. WE’RE still not there yet.
So the Buddhist saying? On this journey I have not arrived at any destination (yet) but I have travelled well along the way. Yes … Really. I have learned a lot more about myself and our family and friends than I ever would have learned had I not travelled this path. I didn’t pick this journey or path or story or whatever you want to call it – and if given the choice no one would – but it’s the path I was given so I’m travelling it. And even though there have been many days of pain and hurt and anger and sadness and guilt – the lessons learned along this journey are priceless and extraordinary so yes I’m travelling well.
Next: 5 Year Anniversary