Forward

“I don’t know how do you do it?”

There are innumerable people who have had a child diagnosed with cancer.  And in the maelstrom that follows a diagnosis and the subsequent hell on earth that these families endure that is the one statement that inevitably follows.

There are different ways to answer it but it really all comes back to the plain fact that you have to do it.

You have no choice.

So you do whatever is needed to get through the days – and you do so with whatever tools you may have at your disposal.

Anger? Bitterness? Faith? Joy? Love? Hope? Righteous indignation?  Tears?  Booze?

It doesn’t matter – all that matters is simply getting through that day.

There are countless painful miles to walk some days – miles to walk under a blistering sun – all while you hope and pray that the brutal drugs you are forcing your child to take are actually working to save them.  To keep them around longer with the hope of some ‘good days’ in the future and not just destroying their quality of life for the few months they might have left.

And as painful as it gets – as positively devastating as some days can be – if you can just focus on what needs to get done you may just get some rest at the end of the day.

Some much needed rest so you can get up and do it all over again tomorrow.

And the next day…

And the day after that.

Until the days have turned into months and the months into years.

So “How do you do it”?

You lock your gaze on whatever finish line you have created for yourself for that day and you begin the long stumble towards it.

Maybe it is something very straightforward and tangible like getting your child out of the clinic that day – or getting discharged from the inpatient floor.

Perhaps the goal is to have today be a day where the smiles outnumber the tears.

Or maybe you just want to get your child to bed.  Because once they are asleep you can drop the veneer of smiles you’ve been wearing all day and you can finally let you bitterness, anger and fear come out to play.

Whatever it is that gets you through the day.

Whatever you can do that helps you from looking downward.

Because looking down is bad.

Down is where all the nasty parts of this reality exists.

Down is where you’ll lose yourself in depression and the useless cycle of asking ‘why?’

Down is the mind blowing, soul sucking black hole reality of this life.

You cannot stare directly at it for too long without it swallowing you whole.  Because it can – it will – and far too often it does.

‘It’ happens:

Divorce.  Parents running off.  Parents who just stop therapy for their child.  Suicide. Layoffs.  Bankruptcy.  A parade of children’s’ funeral. Pain.

It’s all there. Just waiting – lurking – awaiting your stare.

How do we do it?

We focus on whatever our daily finish line is and we leap over these obstacles – these hurdles – and try get through each day as best we can while looking forward – always and forever forward.

And as I sat at the NMTRC conference listening to the scientists, researchers and clinicians giving presentations I could not help but think how there is a lesson here for the consortium of hospitals that we fund.

There are countless obstacles – a mind numbing litany of legal, ‘political’ and funding issues – that make the seemingly easy task of trying to help save KIDS so incredibly difficult.  However, if all we do is stand around and recite this list and talk about how challenging it is then nothing will EVER get done.  No trials will ever get opened.  No progress will ever be made.

The only way to help these kids is for these groups to lock their gaze on the goals and to push towards it.  That fact is what has made the NMTRC such a unique place in the childhood cancer world and it is why we are so passionate about funding this work.   However, it is incumbent upon us as advocates and fundraisers to ensure that this group continues to push forward.  That everyone focuses on the goal of getting new treatments into this children and that the consortium is always looking forward and that we don’t fall into the trap of staring down at all the obstacles in our way.