Journee Marie Weiberg | Shanel Romain
Wednesday, March 23, 2016 || By Michael Romain || OPINION
Spinal muscular atrophy (SMA) is a horrific disease that chokes the spinal cord’s motor nerve cells, gradually snuffing out the ability to crawl, to run in a playground, to jump rope, to bear hug, to hold a sippy cup, to eat ice cream, to see … to breathe.
According to Cure SMA’s website, the disease is caused by a rare genetic mutation “in the survival motor neuron gene 1 (SMN1)” — the gene that, in a healthy person, “produces protein that is critical to the function of the nerves that control our muscles.” And it affects around 1 in 10,000 babies of all races and genders.
Which is why we were anxious when you were born. They, not I, had seen what the disease did to your older brother Josiah, who had died in 2009 before he turned a year old. At the time, I was living a few hundred miles away and didn’t get the chance to meet him. I only knew Josiah by the stories my mother would tell me over the phone of Aunt Alesha’s and Uncle Jim’s baby boy, their firstborn, who had an air of glory and the regal bearing of a king.
At his funeral, which was the first time I saw him in the flesh, a small crown was placed on his coffin and my grandfather, a man I’m not accustomed to seeing shed a tear, wept. In Josiah’s casket, his little statuesque body — seemingly untouched by sickness (he looked like a perfectly normal, growing, handsome little biracial boy taking a nap) — seemed to glow still with that glory my mother phoned me about. Looking over him, I felt something of it myself, and realized that the stories she told must have been true; that in his suffering, he gave many people life. I was ashamed not to have met him.
But then you came — a plump, cherubic-cheeked baby girl with ‘good’ hair that seemed to mesmerize some of your black ‘kin folk,’ me included. We would gawk at it. The women had their own ideas for it. And we all just knew that you were some boy’s heartbreak waiting to happen. Yet, even with all of your boundless beauty, you were born into Josiah’s cavernous legacy, you were his little sister, you had big shoes to fill.
We were hoping and praying that SMA would not get you in its grip, would not test your mettle. Once, when you were just several months old, and before I knew anything of your diagnosis, I softly squeezed your little arm and carefully scrutinized the tight grip your fat little hands had on some object. I was hopeful and terrified at the same time. Sadly, as life would have it, your grip, your ability to clutch, to crawl, would slowly wither.
But, in Weiberg fashion, you, like your older brother and like your younger brother to come, would leave your mark on SMA — it would not mark you. If Josiah wore that horrific disease with a crown, you wore it with Jimmy Choo heels and model eyes and a silent ferocity that could cut a professional fighter down to size.
— More below the photo —
(Top left to right: Journee, Jace and Josiah | Facebook
Your Uncle Jeff found the word for you and told us at your funeral. After the service, I approached him and realized that he was wearing a t-shirt with the word spelled across his chest and surrounded by all of its variations in paragraphs underneath small Finnish flags. The t-shirt was your grandfather’s, once purchased from a shop in a Finnish community somewhere in the Midwest, from what I vaguely recall of our short conversation. Your grandfather, Uncle Jim’s dad, I learned, was Finnish through and through. Sisu, that singular Finnish word, was predestined to describe you.
Loosely translated (and with admitted help from Wikipedia), the word means “stoic determination, bravery, guts, resilience, perseverance and hardiness.” It’s “about taking action against the odds and displaying courage and resoluteness in the face of adversity. Deciding on a course of action and then sticking to that decision against repeated failures is Sisu. It is similar to equanimity, with the addition of a grim quality of stress management.”
By the time your brother Jace was born in 2012, I had developed a particular fatalism about the disease, had learned to live with it, had stopped my forlorn brooding at what kind of children you and your two brothers would have been had this horrible disease not inhabited your innocent, harmless bodies. You were the children you were, perfected and fully formed, and nothing less.
One day, you and Jace were playing on the floor; both of you on your backs, side by side, immobile except for the slight movement of your arms and the subtle shifting of your necks. You kept putting your hand on your little brother’s face and he did everything in his limited powers to express his annoyance — at one point straining to look at me and plead, with his beautifully tender gaze, for me to tell you to knock it off. I didn’t.
You knew this, of course; knew of your brother’s annoyance and his discomfort, but you kept slyly resting your hand on his little face, dead-panning a look of utter seriousness in your mischievous play. I believe you kept up this quiet torment so that Jace would know he was in your domain, where Elmo’s World DVDs, your favorites, played at a constant clip and your seemingly tireless mother and father doted on, and cared for, and tended to, the both you without ceasing.
I also believed you were sending a message to any of us nearby who were not your mother or father — Jace was your little brother and only you could torture him, because you were also his protector. In your short life, you were a Cabbage Patch matriarch, having lived longer than both of your brothers (Jace died in 2013) and having lived through the suffering of someone ten times your age. The wisdom of Ecclesiastes was in your eyes — even in their moments of ‘throwing shade.’
My sister would often relay to me your epic tales of survival, some of which I saw for myself. One moment, you’d be at death’s door, blue from fighting to breathe, and in the next, you’d be smiling at one of Elmo’s videotaped antics, your oxygen mask smothering your barely audible laugh.
You learned to write your name, and to read and spell words, in between mucus suctions — conditions that would give any working adult cause to call off, let alone concentrate. You studied on, undeterred, impassioned even, focused — sometimes testy, sometimes frustrated, sometimes an alphabet block or two would be thrown, sometimes your eyes would cut into one of your teachers or a nurse or an aunt or a cousin or a family friend.
In your final sentient days and hours, your small body curved from scoliosis, your face boxer-swollen, your stomach still ballooned from the softball-sized blood clot that had just been surgically removed from inside of you (a surgery you survived, despite the long odds) — even in the thick of all this, everyone just knew you’d still be here, as I write, watching Elmo, smiling, your face glowing, your eyes singing along with your grandmother’s hymns, despite struggling for air and living with the constant itch of that ever-present oxygen mask.
One time, my sister said, you were put on hospice care. Months passed, however, and you were still here. So much for hospice. And on the many occasions you were admitted into Lurie’s Children’s Hospital downtown, the nurses would light up to see you coming and when you left to go home, which always seemed inevitable (you were always beating the odds), the nurses, I heard, would hate to see you go.
Journee, you were my hero. I admired you, respected the way you handled your struggle, and your astonishing capacity, throughout your short, painfully great life, to emit a spirit, sisu, that evoked not pity, but praise — and a kind of awe. I stood in fear and trembling of your eyes, which you rolled with an ease and ability that seemed preternatural. You were a born diva; a Lebron-like prodigy in delivering sass; a warrior-princess, as one relative said; a dignitary, said another. Such fierceness and nobility was your calling and it will be your legacy.
Your parents, who no longer have the three of you, are in for yet another fight. But you inherited your Finnish ferocity from them and I believe they will carry it like a torch into the dark uncertainty of whatever is to come. And when their house’s silence becomes deafening, the knowledge of your pained smile will be like a soothing ointment for their ears.
As for me, I can only hope to raise what little awareness I can of the horrible disease that crushed your and your brothers’ lives into blindingly beautiful poems, songs of strength in midnight; can only hope that whoever has eyes to read this will remember your names — Josiah Steven, Journee Marie and Jace Mathias — and your struggles and your tales of having survived — tales that I, and anyone who witnessed them, will never forget. VFP