Callen and Olivia shared a bedroom until they were 4 and 6 year’s old, respectively. One afternoon, when they were barely 2 and 4, I put them down for their (my) much-needed afternoon nap. I listened via monitor to the precious toddler banter that was eventually replaced by quietude, save the sound of gentle even breathing. An hour or so later there were sounds of stirring. Then giggling. Faint pitter patter around their room. Then silence again – only this time it was the kind a parent intuitively recognizes as meaning that somebody is up to no good. Or, as the case may be, two somebodies.
I smelled it before I saw it. My feet were barely on the first floor landing when a faint but unmistakable odor hit: cod liver oil with a twist of menthol. My gait quickened as I ascended the staircase. So did my breathing – perhaps driven by the altitude change, the pace of my climb, or the thickening fumes. I could almost taste it by the time I pushed through their bedroom door.
There stood my diaper-clad bare-footed brood, grinning, caught Kabuki-faced and white-handed, their bedroom walls now adorned with a thick coating of freshly applied Desitin® reaching as high as their tippy toes could take them.
My “Mom look” must have spoken volumes: Olivia’s face crumpled and dissolved into tears. Without so much as a question, she quickly and fully allocuted for her crimes, ending summarily with “I wish I were you and you were me so that you wouldn’t have to be so disappointed in me.” Callen, on the other (white) hand, broke into a broad grin and began jumping up and down, gleefully exclaiming, “I did it! I did it! I did it!”
Over the past year, I have thought often about that afternoon. About their innately different personalities. About what this experience is doing to each of them. How it will challenge them. Change them. Influence who they are and who they become.
Olivia was born cooing, smiling, self-soothing and sleeping for six-hour stretches: it was as if she could already sense the needs of those around her (in this case, an exhausted obstetrical intern-of- a-mother with 26 days of maternity leave, and an equally exhausted but significantly more experienced father negotiating the newborn, ‘tween and teen worlds now living under his roof) and do her part to make family life a little easier.
Olivia’s empathy has grown faster than she has, and her responsiveness to and sense of responsibility for others has continued to be greatly out of proportion to her young age. She is drawn to and driven by all that is true and pure and beautiful. She is rational. Articulate. Measured. Determined. Mindful. Even. Particular.
And so achingly vulnerable.
Because at the tender age of six, she was forced overnight to learn that life isn’t fair.
Not the “He had it first, now it’s my turn” fair, the “How come he gets to stay up as late as I do?” fair or the “He got to pick the TV show last time!” fair. But the “There are many types of disappointments in life, but leukemia is one of the worst” fair. The “Dear Mom and Dad I’m feeling so sad I can’t cheer myself up” fair. The “It feels like Callen’s cancer will never end” fair. The crushing and relentless blows to her young heart and life and soul spill over in the things she says, the letters she writes, and – just last night – the homework spelling sentences she crafts.
It has taken thirteen months, hundreds of clinic visits, seven hospitalizations, six ER trips, a few uncelebrated birthdays, several lonely holidays, countless unscheduled playdates, an unattended (by me) ballet recital, a handful of missed school events, her brother’s now two unplayed T-ball seasons and one more ruined spring break for her to actually say the word instead of insinuate it. At least to us. We don’t know what she says to her counselors or friends or fellow cancer siblings. But for the first time, she is saying it to us. Out loud.
It’s not fair.
And once again, she is right.
There have been many occasions over the course of her seven and a half years when we have had to explain our actions, or lack thereof, to Olivia. Inconsistencies or incongruities in thought, word and deed – whether real or perceived – have rarely gone unnoticed. She has always held us in check and to our word. Her memory is practically infallible, so if she takes you to task with “No, what you actually said was -”, it is an argument you should be prepared to lose. And she doesn’t just lobby for herself: her brand of veracity extends to everyone she encounters. She believes in truth and justice for all. And if you let her down, you will know in no uncertain terms.
So if we have learned nothing else over the past year, it has been how important it is to manage expectations. Particularly hers.
As in, don’t have any. Especially if it involves the potential for doing something normal or fun.
And while it may seem simple to divide and conquer – to send Olivia with one of us and keep the other at home with Callen - the few times we have done so have either left her feeling guilty for having fun in his absence, or saddened by the quiet and stillness of his void. So the right thing for us, for now, has been to adopt an all or nothing strategy. The less the kids know about what might be or might have been, the better.
Case in point – just before Christmas, and with the doctor’s blessing, we planned a weekend trip to New York City. Not a word was said until we were loading up the van. How cool did we as parents look when we asked, “How’d you like to go to New York today?” And then, in a crazy act of “spontaneity” (AKA Mommy and Daddy planning for weeks and researching hotels and hospital locations and counting pills and assembling a small M*A*S*H Unit for transport), we had everyone piled in the van and ready for departure a mere 15 minutes later. Only to land in the NYU Emergency Room the next afternoon with a neutropenic fever. Which cut our trip short. But not our sense of disappointment.
So it was completely uncharacteristic that a few weeks after the Christmas incident, we shared our family’s acceptance into “cancer camp” with the children. It was completely by accident, I assure you. Jim was checking email when the notification arrived. He came upstairs and quietly shared with me, “looks like we’re going to Florida in April”. Apparently kids are genetically hard-wired to hear the word “Florida” no matter how softly it is spoken. Despite our attempts to downplay it, the anticipation began.
And it only grew.
On April 5th we were supposed to be in the car traveling 13 hours to the Florida panhandle. Cancer camp awaited us – a unique program designed to give families of children fighting cancer a full week of respite care, counseling, fellowship and fun. We wanted and needed the Lighthouse Family Retreat and all that it promised. Rest for the weary. Yep. That was us.
But twelve hours before pulling out of the driveway, in another cruel twist of happenstance, Callen became quickly and critically ill. Our destination off interstate 95 South became MCV. Olivia was, of necessity, placed into the caring and capable hands of aunts, uncles, cousins and friends. But not before she saw her baby brother once again (and again and again) uncontrollably evacuating the contents of his body. Not before she witnessed him struggling to maintain awareness. Not before she watched as his suddenly weak and limp body was carried place to place. Not before she heard words of parental concern and one-sided phone calls to Callen’s doctor. Not before she saw us exchange the half-packed vacation bags for the fully packed hospital “go” bag.
That first night of Olivia’s Spring Break 2015 was spent away from home but not even remotely as she had imagined or been promised. After she was delivered back to me on Easter morning, the car door had barely closed behind her when the moment of truth arrived.
“We’re not going to camp, are we, Mom?”
In the deluge that followed, Olivia unleashed a year of fear, frustration, confusion, anger and hatred on cancer. Sobs wracked the tiny body cradled in my arms. She choked on her words and her tears. She struggled to comprehend.
Once we arrived at the hospital she was greeted by the now-familiar nurses, doctors, care partners and child life specialists. And each one of them was met with “I’m supposed to be on spring break right now. This is ruining my vacation.”
The first few times she said it I shot her a look, or put a hand on her shoulder to deliver a gentle but meaningful squeeze. After all, her little brother was fighting for his life. But then it hit me that in a very different but no less important way, she was fighting for her life, too.
And so I stopped trying to hold her back.
After a subsequent 6 nights and 7 days in the hospital, our sweet baby girl of honesty, integrity, order and hope has had her impossibly big blue eyes opened wide to things impure, irrational, helpless and random. Our cheerful little girl who used to sing for hours in her crib now cries in her sleep. The precocious two year-old who potty trained herself in the Chicago-O’Hare Airport after our flight was cancelled and her diapers ran out has resumed soiling her big girl bed. Her once endlessly sunny outlook has been clouded by reality: a cheerful “Today will be Awesome” banner sent to Callen for encouragement has had its backside modified to read “Today will be Bad.”
Oh, my dear precious Olivia Grace. How I wish I could be you and you could be me so that I could take all of your disappointment away.
