In July of 2013, my two-year-old son was diagnosed with a terminal brain tumor. Ten days later, I delivered twin daughters. Outside Sam’s hospital room, just moments after receiving his fatal diagnosis, my husband, Mike, and I vowed to do everything in our power to make Sam happy.
At first, we sought happiness in the rare, in the extravagant, in the exclusive. We watched whale sharks glide through impossibly large tanks on a behind-the-scenes tour at the Atlanta aquarium, sparred with Captain Hook at a character breakfast in Disney World, roared at the marble lions that stood watch over the opulent pools at the Ritz Carleton in Puerto Rico, and reverently petted the real bones of a Tyrannosaurus Rex at the Natural History Museum in New York. We chased experience to numb the pain, to distract ourselves from the insidious truths gnawing away at our insides like pirana: Sam had inoperable cancer; he would likely not live a year. Alcohol became a big part of this strategy. A glass or four of red wine melted our reality into something I could swallow, if only momentarily.
After more than a year of seeking happiness by minimizing pain, by numbing difficult emotions, by distracting ourselves, I found myself nearly incapable of joy. Every smile was feigned, every laugh merely air pushed out of lungs at the moment social convention dictated.
I needed a new strategy for finding happiness. To my surprise, I found one when time, money, and exhaustion limited our ability to seek extravagant experiences. I stopped seeking the rare and starting seeing the little miracles offered in the beautiful monotony of everyday life: Sam watching cartoons with his sisters, making friends with the neighborhood kids, attending preschool, coloring, stacking, climbing, laughing.
Today, on the fifth anniversary of his death, I honor Sam by remembering one day I was able to see, a day that I was present for both immense joy and deep sadness.
I roll the vibrant blue balloon off the rippled, metal edge of the hose — carefully so as not to pierce the delicate rubber — knot the end, and softly squeeze it before placing it in the bucket. I smile proudly, knowing I added the perfect amount of water, stretching the rubber enough to guarantee it will burst with firm impact but not so much that it will explode in your hand. Over the summer, Mike and I became water-balloon-filling experts.
From my perch on the hose box, I can see almost the entire cul-de-sac. Ada and Mae, my twin daughters who are nearly two years old, form a closed circle with Catherine, 6, and Nicole, 7, who live next door. Catherine and Nicole are leading the twins in yet another game of Ring Around the Rosy. Though they outgrew the game years ago, the older girls seem content to play as many times as the twins request. Sam is driving his motorized four-wheeler in and out of the neighbors yards at top speed. He has become an excellent driver for a four-year-old with limited vision, able to navigate his ride in reverse for minutes at a time and speeding into his destination at full speed only to break hard and fast at the last second, skidding to a stop at an angle directly in front of his destination. Andrew, 9, follows him on a scooter and Rachel, 10, on a bike. The two older kids allow Sam to barrel towards them only to change directions right at the final moment, narrowly avoiding a crash. Mike is across the street playing HORSE with eleven-year-old Mark. They are all waiting for me to finish tying off another round of water balloons, an activity that Sam loves almost as much as “riding bikes” with his friends.
While my task is tedious, I feel a sense of contentment at this moment. It’s just past 3 pm and the sun is angled perfectly in the sky to warm my legs and feet, inoculating them from the icy hose water that inevitably soaks me as I fill balloon after balloon. The magical sounds of childrens’ giggles punctuated by the occasional shriek of joy, the whiz of Sam’s four-wheeler fading in and out as he speeds around the neighborhood, the steady thud of basketballs on concrete blend together into a familiar and reassuring symphony. The moment, so average, so every day, so normal, fills me with a sense of peace. All I have to do in this moment is fill and tie and know that, when I am done, it will make Sam smile. That feels like a manageable task. Much more manageable than the tasks I had become accustomed to.
“READY!” I call out, loud enough for the entire neighborhood to hear, for it is the entire neighborhood that I summon. I carry the bucket, teaming with balloons, to the middle of the driveway and watch as they all come running. The older kids lean forward, taking huge strides on their lithe, tan legs. The twins' short legs shuffle fast, their diapers shifting back and forth making their bottoms look enormous, their tightly woven curls springing up and down as they hustle to keep up with Catherine and Nicole. Sam zooms over on his four-wheeler, careful not to hit anyone. I keep the hose with me, knowing that if the kids get bored of their usual target — Mike — that I will need it to fend off a potential attack. The kids arrive nearly simultaneously, all hands grabbing for the bucket. Without being asked, the older kids ensure the younger ones get balloons before the game begins.
The fight starts in close quarters, with Mike hiding behind the minivan, giving Sam a chance to get him with at least one balloon. It’s a chivalrous but risky move. The older kids are ruthless and in a few seconds, Mike gets pelted with a barrage of balloons. The kids laugh maniacally and Sam squeals with joy. When they run back to the bucket to reload, Mike takes off at full speed, forcing the big kids to chase him around the entirety of the cul-de-sac. Sam, Ada, Mae, and I hang in the driveway, ripping impossibly small holes in our balloons with our teeth, slowly drinking the water, and spraying designs into the driveway. I write Sam’s name in big, looping letters.
Out of the corner of my eye, I see a small head poking out from behind a tree. I squint in the sunlight and see Andrew, his eyes dancing with anticipation. I scan the perimeter, looking for Mike so I can reveal his location to Andrew. I hear a giggle coming from the bushes to my left. A tingle crawls up my spine, my body recognizing before my mind, that I am the new target. Before I can react, I hear a war cry and see bodies running towards me, arms cocked and loaded with rubbery weapons. I take off around the back of the house and easily create enough distance to thwart the attack. But as I turn the corner into the backyard, I see Mike grinning wildly. I try to change directions as he throws the balloon at me, but it is a futile effort. I barely manage to turn around before the balloon hits me between the shoulders. I scream as the water coats my back. The kids have caught me. Balloons fly at me from all angles hitting my legs and back and even my neck. I am surrounded. I curl into a little ball, shrieking and giggling until they run out of ammunition.
The water balloons are gone too quickly, a problem that had plagued our fun all summer long. We huddle together at the center of the driveway still exhilarated and wet and alive, panting and trying to decide what to do next.
“I’ve got a big idea!” Sam squeals. “Let’s play in the van!” This, too, is a game we play regularly.
I grab the keys and open all the doors while the kids pile in and push the buttons that open the TV screens. The Best of Elmo 2 begins automatically as the minivan roars to life. We all watch as Jason Mraz and Elmo discuss the pleasures of playing outside. Eventually, the two begin a duet, a version of one of Mrazs’ hit songs with the lyrics adjusted to fit their previous discussion about the beauty of being outside.
“Because I won’t stay inside
No more no more
I cannot wait
To go outdoors.”
I watch in the rearview mirror as Sam bobs back and forth, smiling his crooked smile and watching his friends to see if they’re having fun too. The tune is hopeful, sing-songy, light, and soon we are all singing along.
“Well open up your door and be like me
Open up your door and then breathe free
Look at all the beauty
You’ll feel loved, loved, loved, loved.”
There is a part of me in this moment that knocks from inside and whispers a sweet, powerful truth. This is it, she says, this is what you have been seeking. It is in the cul-de-sac, not in New York City or Disney World or Puerto Rico or the Wisconsin Dells. It is in the cul-de-sac that Sam finds the enormous sense of love that is born of true friendship, a space where he is not special but just one of the gang, a group of friends so kind they let Sam take the lead. They build games around his skill set. They roll basketballs down the hill with him and set up a ladder so he can climb a tree. They grab their bikes and pedal furiously while Sam chases them with the four-wheeler. They love him. What you have been seeking is right here in this moment, the voice whispers. It is fleeting, so breathe it in. It is not promised, so enjoy it. It is rare and beautiful, so notice it.
And I do. I let the sounds of our voices singing together permeate my damp skin and ease into my heart. I open my eyes to the faces of the children that surround me; I see their easy joy and I mimic it. I drum the beat of the song on the steering wheel and let my voice fly free rather than softening it to avoid singing off-key. As the song comes to a close and the music fades, Sam looks at his friends and says, “Wasn’t that the perfect song?” They all nod their heads in agreement and from that day forward we will all call both that version and the original, “The Perfect Song.”
As the scene fades on the screen, a darker wave of emotion begins to flow through me. I recognize it. It is the bitter that always follows the sweet. Bitter because I want Sam to have more of this, I want to have more of this. The dark emotion and the thoughts that accompany it make their way into my throat, squeezing so tight that my eyes fill with saltwater. Before the first tears of fury fall, I give the keys to Rachel who is sitting next to me. I calmly walk inside to the bathroom where my anger won’t interfere with the joyful, hearty love in the van. My hands itch to find a glass to fill with wine. My throat screams for the soft, substantial liquid to coat it. My belly cries out for the warmth that accompanies the first few sips. I want to drown the darker emotion, let the wine absorb the bitter, stifle my rage so I can enjoy Sam while I still have him.
But I don’t. Instead, I give the bitter some space. I allow myself a moment to feel it, to let it roam around and breathe. At first, the oxygen stokes the flames inside of me making them burn brighter. I start the shower to drown out the sound and let the flames fly out of me — into my hands and, when the fire burns its brightest, I stifle it with a bath towel.
After a few moments, the bitter dissipates and I head back outdoors to find more of the sweet.