We might not all admit it, but we've all sat on hard chairs or couches in the dark, looking out across a city from a high hospital room window, and thought about the worst case scenario. We've imagined that bed, the one holding the tiny, warm body, suddenly empty. We've imagined going home to a house full of toys, books, small clothes, but in each room, where a child should be, has been, they aren't. The thought is so horrifying, the emotions so gutting, we stuff them down into a box and slam the lid, then rush to the bed to watch a tiny chest rise and fall, to gently lay a hand on that chest to feel the reassuring cadence of a tiny heartbeat, the warmth of a living child, and we exhale, slowly calming ourselves, because the future might hold something terrible, but we can't know if or when, and right here, right now, we are still whole. We try to memorize what this wholeness feels like, lest someday we are left with only shattered pieces of it. (We also get really weird about things like wiping sticky little handprints off patio doors, just in case the worst should happen. Weird as in, we try to keep them wiped up immediately because we know if the worst should happen, afterward we will never be able to wipe away such real, messy proof of their existence. ...Well. Maybe not all of us. I have a friend who has gotten all weird like that. ....Alright! Fine. The friend is me. I'm kind of in a weird place, okay?)
There are parents like us who have as many assurances as can realistically be given that this may alter our child, but probably not kill them. Then there are many parents fully expecting their child to be altered, hearing loss, stunted growth, learning disabilities, and they will take it all if it comes with an alive child. But even they refuse to cross bridges they haven't come to. Life means hope. The terrible possibilities are still in the future, and in the moment, they are still whole.
What happens when the moment ends?
Just...everything stops but the clock's hands keep moving? Moments that were loud and happy become...not? Beds are just...empty? How can one suddenly stop doing what they have done at 200%, lived, breathed and bled, for a year or more? To have a baby was a big adjustment, but we all made it, joyfully. And now, to go back to living as a couple, or with one fewer children...how? This little life that started with dreams and laughter, then fades into memories, how can it end like this? It would be a lie to say I haven't imagined what would happen if it were to be our turn next. Would we cling to everything Daniel has ever worn or played with, or would we run to a new house in a new town, somewhere the memories would not burn our skin each time we touched something he loved? I know us well enough to think we are the running type. But still, how do you leave the last place you were whole? How do you clean out a bedroom that won't be set up again? (Okay, full disclosure, my friend is also weird about moving her child into his own room for this reason. Don't judge. She knows she has stuff, and will have to face it some day. Probably much sooner than she wishes.) On the other hand, how do you stay when the wholeness is gone?
In the thick of it, when everybody was fighting and gaining on their personal battles, when all but the most inaccessible tumors were responding to aggressive frontline treatment, there were sick kids but optimistic parents. Now we are to the point in treatment where a lot of our "hospital family" are home, some completely done with treatment with all options exhausted, just hoping they annihilated the cancer and it isn't growing again, unseen, and some like us- doing years of maintenance therapy to keep the high risk of relapse down. And now is when the nightmares can come true, when relapses start happening.
Today in a church in Longmont, a tiny, polished white box holds an impossibly small toddler named Kaylee Sue. She wears pink and lace, two little elastic hair ties around her birdlike wrist, little pieces of jewelry she would be delighted by if her closed eyes could just open, her new dark hair lies close to her head and barely falls over her forehead. She is beautiful. Absolute porcelain perfection.
Every dream or scenario imagined for her future lies in that box with her. Playgrounds, winter sledding, summer swimming, slumber parties and truth or dare, bikes, pets, first days of school, last days of school. First crushes. First loves. Broken hearts. Prom dresses. Learner's permit. College applications.
It isn't just a box holding a child as delicate as the pink lilies above her. It is holding every future moment stolen from her and her parents. Every experience they will go on to have, they will long for the chance to share it with her, but when they reach for her hand, she won't be there.
She joined her best friend, her mirror opposite, a little girl named Brenna in the mystery that is death. Incredibly, they shared the same exact rare diagnosis, at the same time at the same place. Brenna's treatment ended first, her tumor returned first, her heart stopped beating first. Two little boxes full of dreams.
Another little girl named Simone went before them, one day a fighter, the next, dreams that dried up and blew away. Three complete sets of dreams, enough love to change the world. What happens to all that love when the person it was meant for isn't here? When I think of all the wasted hugs, kisses, and joy, I try to give them to Daniel and Alex and wish them on all the kids who are still here. But it doesn't change the fact that three little girls, and so many more should be growing up before their parents' eyes, and instead, they just stopped. Everything stopped.
It keeps happening. It just keeps happening. While adult health issues attract huge money, families of children with life-threatening or life-ending illnesses bake cookies, hold community fundraisers, organize foot races and bike rides, giving their own money and hard-raised pennies to doctors with promising research, just hoping that these doctors can find answers in their small, underfunded labs, knowing full well that if answers are found, they will be found too late to help their own children. But to them, there is no such thing as "other people's kids". Their own kids die, and they have to comfort themselves by saying things like "she helped get us all a little closer to a cure."
And the hardest to accept part is, they are right. Daniel is lying on my lap right now, drenched in sweat, having cried, nursed, and fought himself to sleep the way only a spectacularly alive three year old in a steroid-induced rage can do. The two of us, in this sticky, soggy bonus moment we would not have had sixty years ago, one year past diagnosis, are sitting on what amounts to massive piles of polished little boxes and urns filled with the bodies of kids who did not survive. Without them, he would not have lasted more than a few weeks beyond April 22 of last year. Every moment we share with him, every time I reach behind me and, by some blessed miracle, his little hand slips into mine or pushes mine away in a display of stubborn independence, every lilting question or exaggerated accusation that comes from his three year old mouth, these were all a gift to us from so many families who placed a lifetime of dreams into a box with a tiny body and closed the lid.
It has to change. Something has to change. Since it is not my child in that little white box today, I have the luxury of anger. Anger fled last night when I stood in front of that perfect little human sleeping in her pink and lace under a big pile of pink flowers; all the angry, fearful voices in my head and heart went silent. A more gentle, more profound sadness seeped into the silent space inside me. It shouldn't be this way, whispered the only voice left. It can't have come to this.
Later, the silence was again filled with clamor. The anger returned. I took my babies to the lakeshore and let their excited shrieks and giggles, the water and sand soothe me. I did a lot of memorizing this morning. The sounds of their laughter and babbling, mispronounced words, the grip of their fingers in mine, the slap of their little flat feet in the foam at the water's edge. I felt their infectious joy wash over me, and tried to memorize how it feels to be whole. 
This is the most interesting blog.. Daniel is awesome
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