Granted — a.k.a. By the Numbers

You never know what the world's gonna show you, it ain't up to you You always think it's gonna happen to another person, it's never ever gonna happen to you You got your friends, you got your money, got your family, got your honey You think you got a million days, but then life comes along And it knocks you right down to the ground and that's why I say ... Everybody ought to hug somebody, at least once a day And everybody ought to kiss somebody, at least once a day Everybody's gonna miss somebody, at least once a day And everybody gotta love somebody, every day                                        — Michael Franti & Spearhead, "Once a Day"

Say goodbye to the world you thought you lived in.                   — Mika, "Any Other World"

It is true - I have been under a rock. I apologize for not having written as of late; it has been a challenge to put proverbial pen to paper, given the survival mode pace of things with James over the past 6 weeks combined with a paralyzing sense of disbelief over what is happening on a global scale. The degree of hatred and divisiveness that defines today's political climate no matter what "side" you're on, something akin to a horror show unfolding on a daily basis across the landscape of our nation and beyond. I thought having a young child with cancer was horrific enough.

A more comforting setting: James asked me one morning recently as we were snuggling in bed, a propos of nothing, "Mommy? How many days have I been alive?" I did a not-so-quick mental calculation and it turned out to be 2,223 days. I realized then that it was 6 months to the day since James was diagnosed, 184 days that this medicalized existence been his (our) reality. Roughly 8% of his young life and counting. Which leads me to the random figures on my mind as of late:

By the Numbers

• Days since James was diagnosed with cancer: 184

• Number of children in the US diagnosed with cancer every day: 43

• Level of immunity i.e. # of neutrophils in James's blood last week to protect him from life threatening infections (normal = >1500): 0

• # of platelets in his blood (normal = >150K): 35K

• Times I have been able to look on Instagram since his diagnosis without bursting into tears: 3

• Days Donald Trump has been in office: 34

• Rank of corrupt government officials among Americans’ greatest fears: #1

• Executive orders signed during Trump's first month in office: 23

• Trump's approval rating after 1 month in office: 38%

• Certified amount by which Trump lost the popular vote: 2.9 million

• Number of children per day who die of cancer: 250

• Number of children globally diagnosed with cancer every year: 300,000

• Number of Americans under age 65 with "pre-existing conditions": 52 million

• Average number of tweets per day from Trump's personal Twitter account: 6

• Minimum # of people Donald Trump has directly insulted on Twitter since declaring his candidacy: 160

• % of the US population with narcissistic personality disorder, according to the NIH: 6.2%

• Number of floors by which the Trump World Tower’s advertised height exceeds its actual height: 19

• Minimum number of countries in which Trump has business interests: 25

• Minimum number of women who have accused Trump of groping them without permission: 11

• Number of times I assured my children that a man like Trump would never be elected: 15

• Degree of empathy Donald Trump seems to be capable of: 0

• Number of people likely coping with significant pain in their lives: ~7.5 billion

• Spinal taps James has had over last 6 months: 11

• Number of different chemotherapy "agents" (drugs) he has had to endure thus far: 12

• Average number of times our family laughs every day (the best medicine): ~63

• % of time I feel incredibly lucky compared to many, many others: 100%

• Amount of strength this little warrior has in him = infinite

Numbers and love. The closest approximations to truth I have these days. It has been quite a wake-up call over the past six months to realize how easy it was to take even the things I value most in life for granted. Of course we all more actively acknowledge, honor and fight for what we care about when it is suddenly threatened. I took for granted the health of my children. I took for granted my ability to work. I took for granted that being groped without invitation on an airplane by a fellow passenger was an offense that any rational person would find reprehensible, rather than condone as acceptable behavior by the leader of our nation. I took for granted that the country we live in would protect certain basic freedoms and human values that I never thought would be under threat. We deal with enough trauma right now in our own household ... and yet each new assault when opening the news of the hour has added grave insult to grave injury, as it were. That said, I am perversely relieved to have something as grounding and all-consuming a mission as keeping my son alive and thriving to whatever degree possible at the moment. It is centering if nothing else, a reason to just keep going, to have hope and faith that things will get better, to not dwell in despair when you have to mobilize for survival. When you're navigating one major tragedy that requires all of your focus and fortitude, another jarring reality - even on a macro scale - isn't quite as destabilizing as it might otherwise be. In normal times, I try to exercise 1x a day. The last 8 weeks in particular have been intense enough with James that even an hour of escape is hard to come by, and I feel hopelessly out of shape. I finally got out for an intense yoga class the other morning, a favorite ritual that I used to do as often as possible. I anticipated that I would be out of practice, sweating and stiff and sore as hell the day after. But somehow I got on my hands and knees, pushed up into plank, and my body didn’t miss a beat. The muscles kicked in, awakened from slumber but strong enough to hold me firm in the poses I thought would leave me flat on the floor and gasping for air.

As far as the insidious political circus happening right now: my only relief is the thought that as a nation, no matter where any one of us may fall on the political spectrum, we will be shaken out of our complacency, no longer taking for granted the democratic structures and principles that have shaped us in the past. Maybe this national trauma will lead to a necessary correction, a galvanization of sorts. Maybe we will tap into collective muscles fallen slack to get back in touch with who we are as a people, as a country, bringing those ideals into stark relief. Mobilized to better understand and fight for what we care about, activated to stand up for what we believe in. Perhaps it takes a “blunt instrument” like Donald Trump to bring those ideals into stark relief for all, and that after this period of turmoil, there will emerge more unifying themes across the divide. I know more about who I am as a mother, a wife, a citizen, a friend, and a human being as a result of what has happened to us over these past 6 months.  I am mobilized, tapped into muscles I hardly knew were there in the first place, no longer half asleep at the wheel of life. So whatever your struggle, whatever your strife, or if you should be so lucky, whatever your bliss - figure out what rings true for you, and answer the call.

We were told by a social worker at UCSF that James qualifies for the Make-A-Wish Foundation; that even though his form of cancer is curable, he is enduring a life-threatening disease and the program is designed for him and his fellow survivors. It’s a wonderful albeit jarring concept for me to absorb – that he will be granted a wish to travel anywhere he wants, or meet anyone he wants, or have his utmost dream come true as a result of what he is going through. As is common practice, they will interview him extensively to make sure the parents aren’t coaching the child to answer “a trip to Paris of course!” or “Season tickets to the Warriors!”  Of course, his Wish at the moment is not to swim with dolphins in Hawaii or shoot hoops with Stef Curry. I asked him, curious myself about the contours of his imagination. It is to head straight to his cousin’s secret closet in Newton Massachusetts to pay with the Legos inside of it. We may wait a few more months for the interview ... In the meantime, when not thinking about wishes of a lifetime, what are our daily rituals? Laughing. Hugging. Kissing his baby-soft bald head, which I do over and over every day right now. Dancing – see below for James’s latest moves despite being pummeled by heavy chemo, accompanied by his not-to-be outdone sister Grace. These are not only our coping mechanisms at the moment, they are also an affirmation that despite these setbacks, we are Alive. The news today that we care most about? The earth-shattering, unexpectedly early blessing from his oncologists yesterday (after yet another spinal tap and chemo infusion) that James is doing so well that he can start kindergarten next week! My own wish come true. And the last number constantly at play for me these days, where there is no fuzzy math to equivocate on, no alternative facts to diminish it:  A mother's love = boundless.