Tuesday, November 17, 2015

Choose to be Strong, Even When You're Not

Resiliency.  Growth Mindset. Grit.  Attribution Theory.

There are a lot of names or buzz words that represent similar ideas.  At school this year, we're all talking a lot about the idea of "Growth Mindset."  Fifteen years ago, we were talking about "Attribution Theory."

The idea is is that individuals who are successful believe that they can learn and change and grow.  They believe that with practice they can be successful.

I think this idea applies to our current situation.  Alex's cancer is certainly testing us in ways we've never been tested before.  We do our best to remain positive and face each challenge head on.  That doesn't mean it's easy.  Prior to this, our medical knowledge was minimal.  It's also safe to say that neither John nor I went into medical fields for good reason.  This is not where our interests or aptitude lie.  But here we are.  We've learned a lot in the past ten months, and our accelerated cancer course is not finished yet.

We appreciate the support of friends and family.  Honestly, though, we're a bit puzzled by the continuous compliments.  It's not false modesty.  We don't see any other option.  When Alex's new PICC was installed last week, the medical team in the cath lab was incredibly complementary about what great parents we are.  That was nice (I half expected them to give us a sticker or a lollipop or something), but puzzling.  Afterward, I whispered to John, "the bar must not be very high."

The thing is, when a doctor looks at you and says, "you need to do X,Y,Z or your child will die," you suck it up and do X, Y, Z.

Alex needs us to be strong.  We have to be his voice and advocate for him.  We have to ask the questions he cannot ask.  We have to hold his hand when he's scared.  We have to do whatever he needs, and we have to make our best guess as to what that is since he can't tell us.

That doesn't mean it's easy.  That doesn't mean we're not scared beyond words.

Right now, I have the luxury of not working and focusing on Alex's treatment.  John is still balancing work as well as Alex's cancer.  If he could, he'd be there for Alex full time as well.  But the bills still need to be paid and we need at least one income.  If I were the higher wage earner of the two of us, he'd be home full time instead of me.

We don't like watching Alex have a PICC line installed, or getting put under for a PET scan, or holding his hands so he doesn't pull the drain out of his neck after surgery.  We don't like sleeping on a hard chair in a hospital room with a stranger watching over us.  But Alex needs us.

We don't always get it right.  Most mornings are hard to get out of bed.  I fall asleep by 8:00 most nights that we're home.  I feel tired in my bones a lot of the time.

Last week when Alex was in the hospital I could hold it all together.

This week, there's a short break.  Alex is at his group home.  He's doing okay.  We're getting ready for tests next week.  Yesterday afternoon, I had a meltdown.  I certainly didn't plan it.  I felt helpless to stop it.  Jessica held me and told me it was okay to cry.  I couldn't let myself do it.  I was afraid if I really let myself cry, I wouldn't stop.  John was worried about me, so he came home early from work.  I ended up just going to bed in the middle of the afternoon.  Today was better, but I didn't accomplish anything.

But that's the end of my window to fall apart.  Tomorrow Alex has a blood draw.  I have things to do to get ready to go to Milwaukee.  In a few days we go to the hospital for tests.  A few days after that we start the process for harvesting his bone marrow.  I know that we have to be even stronger than we've been so far.

We appreciate the compliments, but we really don't see any other way.  Turns out, my magic wand to cure his cancer is on the fritz.  This is all we've got.  Put one foot in front of the other, day by day, minute by minute.  This just sucks.  But I can't focus on that.  Instead, I choose to focus on the positive.  I see Alex's smile.  I know that John is my rock, and I know that I have to be that for him.  Jess is here.  Rusty is here.

Time to take a deep breath.  We got this.  That doesn't mean it's easy, but it is what we have to do.