This year was my 4th NMTRC conference and what struck me as I prepared to depart for Florida was just how much I was looking forward to it. Exactly what about a two day relapsed neuroblastoma conference is so engrossing that I actually enjoy myself?
Is it taking three days off from work?
Is it travelling to Orlando Florida?
Is it listening to scientific presentations and trying to comprehend brilliant bioinformaticians?
That is all just gravy – a sea of information and faces new and old sitting atop the real reason for my enjoyment. The fact of the matter is that I have spent an inordinate amount of my lifetime and nearly all of my experience as a parent dealing with something that is outside of the norm. My life and perspective have changed in a manner that will never allow me to ‘go back’.
There is no normal.
I used to believe that we would go down this awful road and hopefully one day get back to the path we had been on. That I could one day return to the life I had hope to live – to fulfill all the dreams and aspirations I had when I began a family. That is never going to happen. This is not just some bad dream that I can ignore and try to move past.
I have been changed in painfully profound ways.
Ways that make me feel like an outsider many times.
Ways that make it difficult to integrate into the lives of those around me who live outside of this reality
Ways that have removed what used to be important to me.
Everything that I used to believe – all that made me who I was – no longer seem to matter.
The hub of our beliefs that act as our north star – guiding what we do in our lives and the choices we make – has been destroyed. In its place are more basic and fundamental goals and objectives – objectives that rise and fall like a buoy at sea with our child’s health.
As we dealt with the enormity of a childhood cancer diagnosis I found myself so overwhelmed with ‘cancer’ things to do that it was impossible for me to comprehend the depth of this change. It was all I could do to keep my head above water and from drowning in grief, fear and despair.
As we fought for year after year after year to simply keep afloat we blessedly did finally wash ashore. And as we now find ourselves in a different phase of our lives I am attempting to find my bearings. I am trying to understand – exactly what is important to me now?
And as I try to find my new north star – to forge my new hub – I at times stumble along in the middle.
I find that I am now socially awkward in situations where I used to thrive.
I feel disconnected from many people and what used to be so simple – talking – feels painfully forced.
I find that I can easily become bitter over what I consider to be petty concerns and worries that seem to fuel so many conversations that I pull back into a shell so that I don’t have an awkward or inappropriate outburst.
However, none of this matters when I find myself surrounded by other parents who have walked – or are walking this road. Many of the people at this conference year after year have lost their children – and many others are looking for hope. But when I get there and I am surrounded by these people it as if I’ve known them forever.
All of the pretense and silly worries are gone –those things just have no place there – and there is a real yet an impossible understanding that exists between people that might otherwise have nothing in common besides the word neuroblastoma.
So while the work of the NMTRC is extraordinary and the conference is a lesson in collaboration – I always come away feeling better for having spent time around people who sadly understand this unfortunate reality.
It is the most wonderful group of people that I wish I never had to meet because it is nice to simply be yourself – and to feel so connected to others in so doing.
Mind if we hang out
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