53: Dress for Heaven

53: Dress for Heaven

From Chicken Soup for the Soul: Angels and Miracles

Dress for Heaven

I ask of life to shine meaning in everyone who is searching.

~Aurora Hernandez

The morning after she died was unremarkable. I had slept the night through soundly, alone in my mother’s queen bed, unaware of how ten hours could affect three lives. I awoke to a text from my mother. The first line read: “We almost lost our girl last night.” It was the word almost that kept my breathing steady before I had time to register panic or dread. Or Numbness. Or whatever one might experience after finding out her little sister had died.

Almost.

For months Lisette’s health had been declining in an ominously predictable way, so it was really no surprise to learn it had hit a drastic low. According to the compacted contents of a single text box, Lisette had coded—unresponsive to visual, audio, or tactile stimuli—for forty minutes, before the doctors at The Children’s Hospital of Philadelphia were able to revive her.

The thing about an empty house is that it becomes that much emptier when the absences are unusual, unscheduled. It’s not that I wasn’t used to such times. In fact, I anticipated them through long stretches of stability, knowing from experience that happy and healthy were only temporary circumstances in our household. But preparation never made those times feel less hollow, less perpetually nerve-racking. How long would they be gone? What kinds of tests would be administered? Would the results indicate the need for more surgery?

In childhood I mistook this feeling for excitement: an unexpected change that promised a sleepover at a friend’s house. I also coveted the responsibility of packing Lisette’s overnight bag quickly and smartly: her cleanest, full-coverage underwear, and a matching pajama set for strolls to the hospital’s playroom. But now, at twenty-one, the severity of each occasion was no longer lost on me. With maturity came the realization that these “routine” trips were anything but. Until now, I had believed that her return to relatively normal health was a guarantee. Until now, processing an alternate outcome was inconceivable.

Prior to diagnosis, Lisette endured inexplicable suffering and an extreme sensitivity to light. While other babies delighted in the outdoors, Lisette wailed in discomfort until my mother blanketed her face from the sun. She knew instinctively that there was something gravely wrong with her second-born child. The doctors — as would become the norm — turned her away several times, insisting that Lisette was a normal, healthy baby girl. But as Lisette’s pain increased and my mother’s persistence grew, the existence of a serious problem could no longer be denied. By then Lisette’s head was nearly twice the size it should have been.

When the correct diagnosis finally surfaced, Lisette’s symptoms made perfect sense: Hydrocephalus is a condition caused by an inability of cerebrospinal fluid to flow freely and subsequently be absorbed efficiently, resulting in excess fluid that places an unnatural amount of pressure on the brain. Patients suffer a range of symptoms, including sensitivity to light and sound, excruciating migraines, vomiting, and lethargy. Treatment for the condition involves placing a shunt system into a ventricle in the brain, where a catheter connected to the shunt drains the excess fluid from the brain into the abdominal cavity.

Lisette had her first brain surgery when she was seven months old.

Although determining the cause of Lisette’s suffering and providing a treatment seemed like a Godsend at the time, it was by no means a cure. It merely sparked the commencement of a lifelong journey — a one-way path landmarked by periodic surgeries, recurring symptoms, and eventually all-new symptoms which led to a related diagnosis. A secondary condition called Arnold-Chiari malformation surfaced when Lisette turned ten, the acknowledgement of which was slow to come as doctors attempted to lump her new complaints in with the old diagnosis of hydrocephalus. Eventual treatment for this second condition involved placing a mesh screen into the base of Lisette’s skull to prevent her brain — forced downward by the pressure of the fluid — from being impaled on her spinal column.

At age twenty, Lisette had already undergone her eleventh surgery when I received the news of her rapid decline that morning.

Visiting hours were long over by the time I finally arrived at the hospital, but my mother’s knack for getting on any nurse’s good side made my presence a non-issue. We greeted each other warmly, exchanging reserved smiles and pleasantries as if one of us were returning from a long trip. For a few minutes we sat in the brightly lit corridor, and I listened to my mother recount last night’s events in a measured, matter-of-fact tone.

“I remember watching the clock while they worked on her,” she described numbly, “thinking to myself, this is the time they will write on her death certificate. 3:43 a.m.”

Her voice never faltered, her eyes did not well up. She barely blinked or hesitated.

“She’s sleeping now,” she concluded, “but would you like to see her anyway?”

We made our way to Lisette’s room. It was as dark as a space with only three solid walls would allow, the glass panels dividing her room from the hall accounting for a strange twilight glow.

She was sleeping, just as my mother had said, curled with her back to us. A tall, usually slender, girl, Lisette was about forty pounds over her normal weight then. Her illness had kept her bedridden and immobile for months. When Lisette was well, she was the quintessential social butterfly, exercising her wings on a daily basis, flitting from this or that event modeling her latest fashion acquisition. Her personality, her energy, and her wardrobe were an unstoppable force. An overwhelmingly confident, beautiful exterior masked nearly all traces of a chronic illness. But when she was ill, she lost all her energy and we knew we were about to start another round of severe health issues.

I took her in, all rounded curves and oblivion, her hands settled in relaxed fists beside her face like a child.

And the reality of watching her breathe smacked me in the chest, a hand stopping my heart in its tracks. I gasped and began to cry, never taking my eyes off Lisette’s resting form. The blessing of observing her alive overwhelmed me. My mother embraced me, and the same blessing moved her finally to tears as well.

After a minute my mother ushered me out of the room so as not to wake my sister. “Do you know what Lisette told me after we got her back?” my mother asked when she regained her composure. “She said, ‘I was in a room full of dresses. I found two white ones, and I just knew I had to decide between the two. I knew that making my decision would give me permission to cross over. Just before I touched the gown I had chosen, Grampy appeared.’ ”

Our Grampy had passed away on Christmas Eve the prior December.

“ ‘Grampy said to me, “Honey, please don’t do that. You’ll break your mother’s heart if you choose one.” I tried to convince him to let me come with him, because I was tired of doing this. He said he understood, but that I just couldn’t yet. Then I could hear the doctor’s voice, calling my name, telling me to come back. And I could feel her pinching and touching me on my arms and legs.’ ”

Ignoring the chills that overtook me, I smiled, “Leave it to Lisette to think about fashion at a time like that.”

Because humor, like a dry eye, conveyed the pretense of being okay, of courageous acceptance of the circumstances. Because humor kept my mind sheltered from examining the truth: my sister—younger, braver, uniquely fashionable, unimaginably positive — had been only one perfect white dress away from meeting God.

~Chanel Fernandez

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