This is the story of a child that we could not take our eyes off of. A remarkable little girl enabled us to look through a lens in which everything appeared new again.
December 4, 2012. Roxie Mirabelle Forbes crash-landed on us like an ultra-mini-meteor. Slightly more than seven weeks early and sub-three pounds, we like to think she was hellbent on getting the party started. And after three miscarriages, we felt the same damn way.
That party, however, was short-lived. Raging fevers and eight pneumonia bouts within four years left us in tatters. It took so much to bring her into this world. Now it was taking so much to keep her in it.
Roxie was eventually diagnosed with a rare immunodeficiency disorder called Common Variable Immunodeficiency (CVID). Bottom line: her immune system sucked. We also found out that her particular gene mutation was the only one of its kind on the planet. Yep, that was a mind-bender. And because of the significance, a German-based research lab is scrutinizing her cells to this very day.
Every week over the past few years, we stuck a needle into Roxie’s tiny belly. It’s the only way we could infuse her with adult antibodies, otherwise known as immunoglobulin. We called them “good guys” instead. It was a helluva lot easier to say. Besides, Roxie thought she was simply boosting her already awesome superpowers.
She also used a nebulizer and oscillating machine twice a day. They were supposed to keep her lungs clear. But to tell you the truth, they also kept our lungs clear. That’s from all the laughing we did. We’d tell her to sing during the 20-minute therapy. And she was always up for it. So, strapped with a breathing mask and shaking from the oscillating machine, she sounded like a chipmunk version of an operatic Darth Vader belting out god-awful cartoon theme songs. It was uh-mazing!
That routine would likely never have changed for the rest of her days. But the infusions, breathing treatments and regular visits to our immunologist, cardiologist, pulmonologist and other “ists” never got her down or ate her up. In fact, Roxie captivated doctors to a point where they were like family. It was love. And it was breathtaking.
Oh, and she was also born with two Ventricular Septal Defects (VSD)—holes in the heart. But they closed on their own. Roxie reminded us that it was because of her superpowers. We agree. After all, she once ate an entire bag of popcorn in about 48 seconds. You try it.
Despite her condition, Roxie was encouraged by her doctors to do what other kids did. She ran, jumped, danced, sang, traveled, learned, splashed around in the Pacific and the Atlantic, and she drove us nuts with her willfulness. Normal stuff. Growing up stuff.
Best of all though was Roxie’s was pee-in-your-pants sense of humor, especially because she used it to help other children—and adults like us—emerge from our own nonsense.
But now that she is gone, that nonsense is front and center. We can’t hear her perfectly deliver truly bad jokes. We can’t turn to her inimitable smile when life throws darts. Because, life threw us the worst dart of all.
Time now wounds all heals. Yes, not the other way around. We keep thinking she has to be alive somewhere. When will she come home from running away? When will we open her bedroom door to find her on the other side, clicking Legos into place or crafting odd, Cubist-like drawings that made our hearts sing. When will she stage another full-on play with a cast of plastic characters on whose behalf she whispers a range of indelible voices?
But Roxie is never her nor there, of course. After all, this is real life, and real death. Her cars and her games and her stuffed animals and her books and her pencils and her shoes and her hair bands and her hats and her sunglasses no longer have their favorite companion. This once infinitely animate space is now without a trace of oxygen. That’s because Roxie gave all the air she had left to the unforgiving waters of a summer camp pool…and a neglectful summer camp staff.
No more burgeoning friendships at her beloved San Rafael Elementary, a Spanish immersion public school where magic happens each and every day. No more Go Fish battles with Grandma. No more sublime visits with aunties, uncles, cousins and dear friends. No more cereal milk moustache. No more bike rides to feed the “duckies.” No more birthdays or holidays or Mondays or Sundays. No more quiet conversations about how the world works.
No more firsts. No more “Momma” or “Daddy.” No more hourly “I love yous.”
No more parenting.
There is one thing and one thing only that anyone really needs to know about Roxie. She loved to love.
That was her purpose, her life, her legacy. Interactions were far more important than things. She embraced her teachers, her doctors, her friends, her friends’ parents, her camp counselors and even strangers. And she did it with all her might. Man, she was the best hugger ever.
Over and again, all who knew her—for mere minutes or for her entire existence—have reminded us that she was a little girl who, in fact, did leave the world a better place than she found it.
My wife and I always sang and read to Roxie before bedtime. But on June 28, we did so by the side of a lifeless vessel. Her heart pumped at the command of tubes and drugs. Her once bewitching blue eyes were half-open yet vacant. Her skin cold, colorless. Lovely little limbs were bloated beyond recognition. Her body smelled of metal. Gorgeous blonde locks hung stiff, straw-like.
That is what drowning looked like. And smelled like. And felt like. And it was our very last memory of her. Haunting, dreadfully unfair.
Drowning is silent and relatively rapid in its initial stage. The body, especially young bodies, can survive minutes before unconsciousness and upwards of 15 minutes before irreversible brain damage or death. Roxie’s heart expired for 40 minutes before the miraculous medical team at Pasadena’s Huntington Hospital turned it back on. But her brain had long since quit. Everything in its wake, especially the unique, bright light we loved more than anything in this world, was turned off for eternity.
We sent Roxie to Summerkids camp for the same reason other parents send their kids to camp. Roxie needed to be with children, to experience the wonderful world about her and to fashion memories for a lifetime. After all, Summerkids camp said it is a “place where the #1 rule is to have fun.” We had no idea “fun” included a level of ill-preparedness that stops a heart. Perhaps their number one rule should have been to simply keep kids safe while they were having fun. That’s not too much to ask, is it?
As I write this, my wife lies on Roxie’s bedroom floor next to a Tonka truck and wooden building blocks. Her violent coughing jags amid alarming sobbing spells are grueling. My hands, arms, legs and head tremble beyond control since Roxie died. I am aging at the spped of sound. Three lives, not one, were stolen because Summerkids camp failed to honor basic promises.
Roxie will not die in vain. Our new purpose is to end this senseless, ceaseless battery of preventable drowning deaths and near drowning consequences. Drowning is the second leading cause of death in U.S. children ages 1-4 and the third leading cause of unintentional injury death among children and adolescents ages 1-14. Near drowning deaths—that lead to irreversible mental and physical impairment—total in the thousands each year.
California camps do not require licenses. You heard that right. We license day care centers. But we don’t license far more rigorous day camps and overnight camps. That’s because county health and safety officials don’t want to take on a little more oversight or have to pay for it. They have lobbied against protective legislation for nearly ten years. And lawmakers have allowed them to win every single time. And we aren’t the only state that endures the consequences of no licensing requirements or lax laws.
Our girl should be sitting at a desk in her first grade classroom right now. Instead, her ashes lie inside a 6 inch by 8 inch box.
Enough is enough is enough. We are going to show Roxie’s face every chance we get. Legislators will pass Roxie Rules. Parents will learn to ask important questions instead of merely trusting a flawed system. And lives will be saved. This is not about mitigation. This is about elimination.
Through donations, grants and other means of support, we will also foster pediatric immunology and cardiology initiatives through Children’s Hospital. If we keep these efforts alive, we keep Roxie alive in all of us and our children.