Brave the Shave

Look at that thick head of unruly hair just waiting to be shaved off.

This is Jonah right before we shaved his head, in August 2015.  His hair had started to fall out from the chemo and we decided it would be an easier emotional toll to get it all done with at once.    

This is Jonah right after we shaved his head.  This was the bald shiny head that we came to know and love during his 10 months of treatment.  It wasn't until he was done with treatment in May 2016 that his hair started to grow back.

This is Jonah today.  Look at that full head of messy Justin Bieber hair.

When you're thrust into the cancer world, there are so many scripts that play in your head of how things are supposed to go.  Cancer cliche things - nausea, vomiting, hair loss and on and on.  One of the scripts that played out for me was around hair loss and siblings.  I'd seen it play out before with other families - as a sign of solidarity, when the sick child lost their hair, a sibling would willingly shave their hair so the sick child wouldn't feel alone.  It was beautiful and emotional every time.

When it was our turn to write the hair loss portion of our story, we followed a different script.  The time to shave Jonah's head was undeniable.  Every time we lifted him from bed, his pillow case was covered in bright blond flossy strands.  Snuggling him in bed required brushing off your shirt when you got up.  It was a hard cliche for me to walk through, and I desperately wanted to follow the script of sibling solidarity to make it easier.  The thing is, the siblings weren't ready.  They were young (8, 6 & 2) and we'd only been following the new script for about 5 weeks.  At much as we tried to keep the expectation, the despair or the hope for a certain script out of our voices when we asked the other kids, I'm sure they knew it was there and they dug their heals in.  None more so than Noah.  He of course felt the most pressure - being oldest and being a boy, but he wasn't ready and he stood his ground.

There are certain parts of the cancer journey that are seared into my memory banks.  This day is one of them.  I wasn't able to be in the room during the shaving.  I left my son, with a thinning head of hair, to sob quietly in the hallway while Simon made the transition.  I returned to a little boy who had shed the last bit of his "healthy" disguise.  I returned to a little boy who looked as sick as he was.

How glorious it is to have that day so far in the review view mirror.  The progress our family has made in the last 2 1/2 years is something we thank God for everyday.  It is a literal miracle that we've come this far.  Jonah survived treatment, his scans are stable and he's in kindergarten doing normal kid things, looking better and better everyday.  Our family is together, in rhythms that are normal and life-giving.

And now, Noah's ready.  He's shaving his head, in solidarity with his brother.  In solidarity with all the kids we know and don't know who are bald right now because of their cancer battle.  He's shaving his head to help change the face of cancer for kids in the future.  To support research for better treatments - treatments that cure the cancer without so many devastating side effects.

We couldn't be more proud of Noah, because not only is he doing a noble thing, but because in the act of doing it, he is demonstrating how much he has personally grown and worked through related to our cancer story.  This is different than the script I was trying to write in August 2015, but this script is healthy, without expectation or pressure.  This script is of support, love and encouragement - just the way it's supposed to be.

For the details - Noah will be braving the shave with St. Baldrick's on Thursday, March 22 at a local elementary school.  If you would consider donating to his cause, I know that this fundraising effort is proving to him that he can make a difference. (https://www.stbaldricks.org/participants/mypage/965263/2018/)

It should also be noted, that they're all ready.  They're all ready to make a difference in a way that's tangible to them.  Anna has been growing her hair for over a year now to be able to make a 12 inch donation to Wigs For Kids - an organization that provides cancer kids (among other conditions, but they started with cancer) free wigs.  More will come on that once she finally crosses that length threshold - maybe this summer.  Julia's getting ready too.  She too talks about donating her hair, so stay tuned for those details.

In the end, the thing that's true about cancer scripts is that they never actually play out the way you think they should.  During a time in life when you want ultimate and supreme control, you realize you have none.  It's been a good lesson to take into the post-treatment life too.  I am so thankful that we get to watch our script unfold this way.