Sometimes I blurt. I try to spare people, but I can’t.

“If you choose one of our light-filtering roller shades in black or dark gray, it can really give you the look you want with increased privacy.” She shifts from one foot to the other in her blocky black heels. Her upscale dress convincing me that posh window coverings really are the “jewelry” of a window. “You had mentioned Roman shades, but I don’t know if that is the modern look that you want.”

I quickly reply, “I am emotionally attached to the idea of Roman shades.” I hear myself explaining that I have strong feelings about an interior design item and sense the strangeness of it. I feel found out. I imagine that her eyebrow goes up, but I’m sure in retrospect that all she does is pause for a half a beat before saying, “Well yes, these can be lovely.” I scroll down the sample wall with my finger, pausing to read the names of the fabrics: Herringbone Mist, Mushroom Bisque, Bryce Biscotti, Hudson Sands.

“Hudson! That is my other son.” She feigns interest. I intensely feel the need to tell her this thing that is so important that I will no doubt not be able to continue without her knowing my deepest, darkest grief. I feel the news gather in my throat and warn myself not to share. Don’t dump this hard thing that makes people squirm on this woman in this beautiful, airy store. I can’t help it. I turn to her as she kneels sideways in her pencil skirt to open a new drawer of samples. A rolling marble-like sound escapes as it glides out effortlessly to share more shades of gray, white, and beige squares in a partitioned grid. She says nothing. I blurt.

“I am redoing my room because my son died. It seemed empty after I took out his bed and I needed to fill it with things like him. I have a vintage duck wallpaper, photographs of trees, and I wanted to have Roman shades, his name was Roman, he was five.” I continue, “I’m sorry, that is a lot to share. Let’s not act weird. Let’s just find a great option.”

I feel better, relief, a shared sense of obviously-imagined purpose with this lady but also a little ashamed that I couldn’t just keep it to myself like a calm adult. To her credit, she takes it well. I left with thirty swatches in a gray cardboard box that ties by a black string working figure eights around two circles. I found myself putting my phone face up on the counter with his cute little face supporting an oxygen cannula and spikey hair hoping she would look. I want everyone who will never meet Roman to know how special he was, he didn’t get enough time to share his greatness, but I’m aware my desire to share is sometimes inappropriate. I want to use my grief as an excuse for complete strangers to understand strange things that I do. People aren’t noticing, but I am. I can’t find my car in the parking lot, I forget why I went to the store, I can’t plan, and I typically love a good, color-coded schedule. I’m living raw in the moment, and I want people to know. Selfishly, graciously, I want to share because I’m sure I’m not alone in the recalibration of life that happens after a death.

I would face the other way in bed when Roman didn’t have a nurse and slept in our room. Light contamination: the green lights of the oximeter and the white, square glow of the ventilator were my night-lights. Not that I was ever in a deep sleep. The same way a mother hears the little clicks and sucking sounds a newborn makes and knows when her baby is awake, I could sense if he had secretions, “bubbies” as we called them, under his nose or in his throat. I would be awoken multiple times during the night by low-oxygen or high heart rate alarms, causing my husband or I to start up the suction machine like a leaf blower in the bedroom. Sometimes his cannula would come out and I would hear the hiss of a loose air. At 1 a.m. my phone alarm would go off for more treatments and meds. Additional PRNs would be given as needed when he would be awake with pain. So, I would rest but not sleep, always aware of his presence and my duties. But now, I do sleep, and in the morning, when I roll over toward the crib, it is empty. Week after week a vacant-looking jail, too small for the petite five-year-old we still secured there until this past spring. While I have not packed up his room or very many of his things at all, the absence in his crib was too much of a reminder when I first opened my eyes. I was driven with fabricated purpose. So, I measured, and I searched online for something to fill the void and then I moved the crib into the hallway. I sat down on the bare rectangle of wood floor newly scrubbed of dust bunnies harbored under the mattress. My chest tightened, and my face flushed as I felt the ache of tears rise from my throat. I can’t put it back, a chair isn’t enough, it must be filled with presence, not matter.

He used to lie on the lower quarter of our queen-size bed with his head turned to see the TV. We had fashioned a three-tiered AV cart with his copious medical equipment. Cords filled with food, bile, wires, and oxygen draped from the cart onto my bedspread and if you wanted to go around you had to shimmy between the mid-century dresser and the cart to get to the head of the bed. He lay there because that is where we all lay—it was the family bed. The cat, my husband, my older son, Roman outstretched with the most real estate, and me with my knees folded up to give him room. Often not breathing well enough to do other things, Roman could manage family movie nights and so those became a respite for us all. Our bed was a place where everyone gathered; a comfort, a mattress to hang on to when the world got rough, people were sick, or the news was scary.

At night, we had a routine. My husband and I would take turns putting one or the other child to bed. One child required jammies, a story, and their teeth brushed. The other required 7 p.m. percussive vest treatments, nebulizers and cough assist followed by jammies, teeth brushing, range of motion exercises, 8 p.m. medications, and a transfer to his room for either a night nurse to look after him or a transfer to his crib in our room for a dance of interrupted sleep and care.

I felt the pressure for the five years he was alive. I was a motivated, heartbroken human awaking each day with a deep breath, and a muttering to myself of “I can do this.”

I spent my free time searching the Internet to find new studies of anti-seizure meds, information on each new diagnosis and the resulting life expectancy, making a tally of all the different conditions he had in my head as if there was an equation that would then tell me how long I had with him. My Facebook was filled with parent groups for hypoxic ischemic encephalopathy (HIE) and Lennox-Gastaut syndrome, Keto diets, and special needs equipment swaps. I now scroll only through people’s pictures, and I search for furniture as if finding the perfect dresser is as important as teaching myself medical terminology. I can’t stop the obsessive searching. My hunting used to be the mad search of a mother trying to find answers to save her son, but now I am gathering information about trivial things to fill the empty spaces in my home and head instead. I can’t bear the unstructured time and space laid out before me.

My son died under the tree in our back yard. It was May and the maple tree was raining neon- green pollen bombs into our hair, and collecting in small piles on the deck and seats of chairs. He loved trees. He had a visual impairment that limited his vision to only bright colors, lights, and shadows, so leaves blowing in the wind with sunlight streaming through calmed his face and brightened his eyes. He was unconscious much of the last few days leading up to the departure from his body, but when I rolled his cart over the entrance bumps of the doorway to our balcony, he felt the sun on his face and raised his head. I rocked him in our chair and watched the branches, I hummed lullabies, we held each other. My husband and I were on the back deck of our house—my son’s home, our home—when he died.

It is October in the bold north. The leaves have hit their peak of color and have begun to fall to the ground. Today is what I call “seasonal preview day”—a day that the weather gives you a preview of the next season to come, like a warm day in March, or in this case, autumn snowfall that sticks to the leaves and grass but melts on the pavement. Watching his tree shift seasons reminds me how much time has elapsed. It makes me sense the space between the time when he was here and the time now, when he is not. I dread the shift in seasons, and the coming holidays.

When Roman was here, cold winter months equaled cold and flu season. It meant hospital stays, and later when he was in hospice, it meant the potential for scary near misses with intensive care for us and our home nurses. It meant reading him his favorite book as we waited to see if his body would make it through the virus that had been brought into the house. It meant Clorox wipes on doorknobs and washing hands until our skin cracked. It meant big brother quarantined downstairs with the sniffles, and during the pandemic, it meant isolation and stress. This year, I don’t have to worry about germs in the same way. Sicknesses are manageable with rest and treatment. Runny noses are just runny noses for bodies that can clear mucus and airways.

I wonder if I can embrace the snowy days this winter, the warm sweaters, and possible warm weather vacation we are able to take? Living with a child who has a life-limiting condition exposes you to the wisdom of gratitude for the time you have with him. Holding hands, stroking hair, memorizing the curve of his cheeks. You know time is limited so you hold it close. The seasons change and life seems so simple it is incomprehensible at times. Thunder is just thunder. The power outage not a pause in life-sustaining equipment, but a chance to light a candle. We just go to bed, I close my eyes and sleep through the night, the foot of the bed is empty. There is a sad ease to our days.

Can our easy life not feel like a punishment? I am trying to heal in the simplicity. Trying not to be ashamed or feel guilty for enjoying the space and lack of difficulty as I simultaneously hold gratitude for relief and the burden of grief. I have learned to bow and bend in reverence and flexibility of ever-changing medical statuses. This is another stage to bend to, to concede to. I suppose that eventually I will get used to the easiness of it and the difficulty will only be a memory.

I am reimagining my home. I did this once already, way back when Roman came home from the NICU. It had to become functional for medical care. I needed extra cabinet space for medicines and counter space for drying syringes. Later, I needed strategically placed supportive medical chairs peppered around the house so that I could waddle from room to room, carrying his thirty-pound body in one arm and dragging a rolling cart with medical equipment behind me tethered by life-sustaining cords. At first these additions seemed like eyesores. They made my house look like a hospital instead of my former home. Strange sounds that seemed like they were out of a medical drama on TV happened in my living room. But these objects, sounds, and routines became an extension of life with my child, they embedded themselves in our existence as a family. The hum of the oxygen concentrator was our white sound machine. My sound-engineer brother came over to professionally record it before the medical equipment company rolled it out our front door. As I pack away one item here or there that no longer has a purpose and doesn’t spark joy or a happy memory, there is unoccupied, barren space. I imagine a cold wind whipping through the house and whirling in the spaces that were once occupied. Simply subtracting feels awful. It feels like additional loss. Like when things seem clean and spacious after removing your Christmas decorations in January but in this case, the clean spaciousness is accompanied by grief—comfort and joy absent. My home where Roman lived and died will not be devoid of his memory or his presence. People find so many ways to deal with this practical task after a loved one dies. There is no right way. There is no singular feeling either. But for me, part of my process is acting like a mediocre interior designer as I replace the practical medical items with artistically designed memory-loaded objects. These encoded items can sit in the hulled-out niches of the home where something important of Roman’s once stood. A crib, a cart, a chair—and when I look at it there will be a secret nod to our family’s past.

But if you come over, I will probably blurt, “this is a roman shade, that was my son’s name.”

Share This: