How Waiting for My Daughter's Passing Feels Like Living in an Aquarium

I knew this was coming. At least, I suspected it would come. The whir of the oxygen machine, the light from the monitors illuminating a little body in a big bed. Bags of saline and medicine and food hanging 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 with glass doors and windows for observation by the hospital staff, we are swimming in the unknown.

“How is it going to happen? What do kids with Sanfilippo syndrome die of?”

I asked the genetic counselor this question within a week of getting my daughter’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 my daughter’s 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. How would I like that moment to go? I have thought it maybe would be easier if my daughter would go in her sleep, but then I fear that she would be alone and scared. I didn’t know if I could handle being with her, watching her breaths and wondering which would be the last.

Now, though, I desperately hope I’m present.

My daughter’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. Still, 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 — there are no goggles or flippers as part of her ensemble.

I navigate my own flood of emotions: resignation, fear, longing, sadness, anticipation, and exhaustion. 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, but other times, they gently rock me, soothing and consoling me.

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

There’s healing in the water.

The flow and rhythm.

The waves and ripples.

The pulse in the fish tank of the womb.

My daughter navigated the baptism of water and blood into a new life after gently swimming and swirling and stretching for nine months. I hope I get to care for her body as her soul makes the transition to the next destination. I hope I get to tell her I love her. I hope I get to witness 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, and 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 breathe in the scent of my daughter’s hair, touch her skin, and feel a wave of gratitude for the gift of motherhood.