Oxygen and Aquariums

I knew that this was coming. At least I suspected it would. The whir of the oxygen machine, the light from the monitors illuminating her little body in a big bed. Bags of saline and medicine and food hang from the iv pole, like a medical jellyfish. Sea turtle decals on the doors and large pictures of the ocean on the bathroom wall.

In our little aquarium, glass doors and windows for observation by the hospital staff, we are swimming in our unknown.

“How is it going to happen? What do kids with Sanfilippo die of?” I asked the genetic counselor this question within the first week of getting Anni’s diagnosis. Maybe ignorance is bliss, but I needed to stare the shark right in the face, instead of just feeling it circling closer and closer.

“Respiratory failure is the typical cause.”

Now that we’re in the hospital with a respiratory illness, a blue tube running from the whirring machine to her mask, I wonder.

I wonder if this is it. In the thousands of times that I’ve thought of her death, every day for the last ten-and-a-half years since that first phone call, I have asked myself an impossible question that has no right answer, and no way to choose anyway, how would I like it to go? I have thought it maybe would be easier if she would go in her sleep, but then I fear that she would be alone and scared, but I didn’t know if I could handle being with her, watching her breaths, wondering which would be the last.

Now, I desperately hope I’m present.

She’s like a scuba diver, but the ocean isn’t outside of her. The waves crash on the shores of her lungs and I’m reminded that we’re made of water but when the floods come and the dams break, water flows where it’s not supposed to and there’s wreckage. Her oxygen supply sits on wheels, no goggles or flippers as part of her ensemble.

I navigate my own flood of emotions: resignation, fear, longing, sadness, anticipation, exhaustion, and I’m treading water. I’m not a good swimmer, but I have learned how to let the flow of emotions come to me. They sometimes come in waves, threatening to capsize me, and sometimes they gently rock me, soothing and consoling.

I’ve heard it said that salt water cures all things: tears, sweat, and the sea.

I know that to be true, as I have let salty rivers run down my face, gasping for breath between sobs. I have worked my body, pounding out frustration, confusion, or joy as the sweat drips down my nose and makes my glasses slide. I have felt the delicious dichotomy of my shrinking irrelevance and profound significance as I’ve stood with my feet in the sand and the vast ocean stretching out before me.

There’s healing in the water.

The flow and rhythm

waves and ripples

the pulse in the fish tank of the womb

She navigated the baptism of water and blood into a new life with strength after gently swimming and swirling and stretching for 9 months. I hope I get to care for her body as her soul makes the transition to the next. I hope I get to tell her I love her. I hope I get the privilege of witnessing the crossing. I hope I get to mother her and labor with her, in pain and joy and wonder.

But not today.

Today, we adjust the flow of air, silence alarms when the iv line is pinched, adjust her, check her skin, change her diaper, rub her legs. Today her wild hair gets caught on the stickers attached to her chest and the straps keeping the mask tight on her face.

Today I breath in the scent of her hair, touch her skin and feel a wave of gratitude for the gift of motherhood.