No Ordinary Birthday(s)

On June’s first birthday after she died, which was her second birthday, a friend texted me and said, “The skies cry for June today.” I looked out the window. I hadn’t noticed that it was raining. In the dense fog of grief, I hadn’t realized the skies were in fact crying.

On March 13th, the day June died, marking one year since her passing, the skies, again, cried. Now, I can only remember the skies crying on days that seem to carry the weight of any significance. Would I remember them if the sun had shone?

Today, on my thirty-eighth birthday, the skies are crying. It makes sense, I thought as I sat in the doctor’s office this morning awaiting my annual physical of which I had neglected to notice I’d scheduled for the morning of my birthday. Most likely a scheduling conflict which occurred when I left the office around this same time last year. Even if I had noticed that the appointment was scheduled on my birthday, as I exited the doctor’s office one year ago, I probably didn’t think that I’d make it another year. How would I survive? I had only just lost June. Did I care if I survived? Not then, no, but I do now. That’s one thing that did change in my thirty-seventh year. 

The forecast for tomorrow, the 13th of September, is rain. Tomorrow marks exactly one-and-a-half years since June died. The exact amount of time that has passed since June died is the exact amount of time that June was alive. She lived one-and-a-half years. It has been one-and-a-half years since she died, tomorrow. Next Friday, her birthday, marks her third year. If she were here, her years on earth would triple. Since she is not here, her life is doubled when she turns three on September 22nd. This equation makes sense to me, but so does the meaning I assign to these dates, a small piece of June’s afterlife. 

“June over the years,” was the first automated video displayed on the photo widget on my phone this morning. Happy birthday mama, I felt like June was saying to me, as I swiped past the video. I can’t right now, I have to get the kids to school and make it to the doctor (on time). A trauma within itself. Wondering, did the phone generate the video because I hadn’t recently taken any photos of June? Not for at least a year-and-a-half. At times since Bella, our beloved dog died, the phone does the very same: creates a beautiful montage of Bella’s life. Thirty-second videos highlighting moments of both June and Bella’s lives grace my phone regularly. My phone must know they’ve died. Since I’ve decided the skies are crying, I’ve also decided June and Bella are sending me a memory of themselves when I need them the most.

The birthday exists as a continuation of life, one that I took for granted every year before June became sick. The day itself comes once a year. My previous relationship with a birthday was ignorantly celebrating the happy moments of which my life consisted mostly of as an adult. Happy moments. Since June died, I have a more realistic approach. In this last year, I have come to terms with life being not only happy moments, but also gruesome and terribly sad ones as well. These moments and memories of moments like I describe, lend to both a more fulfilling and fragile existence. Daily, I perform a tightrope walk. Will I fall into fulfillment today or will fragility take hold and pull me down?

I imagine my birthday in two ways. I imagine what it would look like for fragility to take over today. I’d crawl to the back of a dark cave. A dive bar is close enough. The only energy I’d expend is in hoisting myself up onto a worn bar stool. Subsequent energy will be spent lifting a glass to my mouth and swallowing the liquid inside. A dark and stormy seems fitting, so first I’ll order that, no ice. My hair is greasy. My nails, unmanicured. I’m wearing slippers which I noticed as I was walking out the door, but didn’t care enough to change. I don’t have my contact lenses in, and halfway to the bar, I realized I’d forgotten to put my glasses on. I dropped my kids at school on the way to my final destination, after rushing them out of the house, “Mommy’s got things she needs to do today,” I said as I slung backpacks with yesterday’s water bottles in them over my shoulder. 

The ginger beer in my dark and stormy tastes optimistic. Stupid name, I think as I spit the first sip back into the glass and flag the bartender. “I’ll take a Jim Beam,” I say, “water back.” It’s that kind of day. The bartender says nothing, and dumps the dark and stormy into the sink just behind the bar. It’s that kind of drunk I’d like to be by nine-thirty in the morning on my birthday. Once the buzz starts to kick in, so does the flood of self-pity. This isn’t the way I intended for my life to unfold. This isn’t who I want to be. This isn’t my life. Is this really my life? I asked myself that last question one thousand times in my thirty-seventh year. 

The fulfilling existence I’ve worked so hard to achieve in the last year-and-a-half won’t allow the fragility to take over today. You won’t find me in a cave that is a dive bar wallowing in self-pity. I’m stronger than that version of myself. Drinking would only prolong the inevitable pain which I’ve learned to acknowledge and feel, so that it doesn’t linger. It’s gone with the passing of a day or even a few hours now. 

I survived to see another year and for that I am grateful. I vow to continue to create new meaning in my thirty-eighth year. I will honor June by accepting this year and allow the unfolding of life to occur and maybe, even a little bit, look forward to what I cannot predict because surely, there’s something in it for me. 

The dense fog of grief lowers itself into my life with every passing significant day. I’m walking through it instead of stopping as I once did. I am only steps from the ocean, which I am unable to see, but I know it’s there because I hear it. The fog, once gray, turns bright white stinging the backs of my eyes. I am engulfed in the light. The air is heavy around me. I can feel it weighing on my chest. I walk toward the ocean because I trust it’s there, and as I feel the cool water wash over the tops of my feet, I know I am right where I need to be.

The light is brighter now than before the fog existed.

Did I need the fog to magnify the light?

Fullfillment takes over.

Fragility dissipates.

The sky continues to cry.

It makes so much sense, I think.

September

When I woke up this morning, the month of August was gone. September had quietly snuck in while the world was sleeping. I woke up before the kids, walked downstairs, and crawled under a blanket on the sofa. I opened the computer, and as I began to type realized, Oh my god, it’s September. All year I’ve dreaded that September would come.

Early morning tranquility drained from my body and was replaced with angst. We were already five hours into the month and I hadn’t realized it. Of course I hadn’t realized it, I was sleeping! I made a quick post to Instagram, something I’d already decided upon a day ago. An effort to be both proactive (to raise childhood cancer awareness in honor of June), while trying to take back control of what I cannot. My first attempt of the day to put a label on the meaning of a little piece of June’s life. The post read like this: “September is Childhood Cancer Awareness Month”.

Now I write in protest of September. It’s not fair. I want to have a tantrum. I want to scream. Throw myself onto the ground and bang my fists on the hardwood floors. Self-pity is ugly. I want her back. These things won’t bring her back. Bruises on my fists will create new pain. Instead, I cry, safely on the sofa behind my computer. Not on the floor. I don’t have a tantrum. I write. It’s all I can do to channel the hurt out and away from my body. The sticky residual sorrow that won’t leave, I expel through tears.

June turns three years old this month. Can I say that? Does she turn three or would she turn three? It will be three years since I gave birth to her. She will not be here to embrace her third year, but despite that, it’s still her birthday. It counts. To give myself peace surrounding the subject of June’s birthday, I decide June will be one-and-a-half in earth years, and turn three this month. June can have it all. Mama says.

I think about my three year old June. My big girl. Surely she would be walking and talking by now. Her hair grown out. The majority of her teeth in. I wonder if she would look more like her younger brother or her older sister. I decide, coincidentally or not, as the middle child, she’s the perfect combination of both. Our son has her big white teeth. Our daughter has her hair. Not the platinum straight hair that grew back after chemotherapy, the hair from before. The auburn waft that bounced on the top of her head when she sat on my hip and we danced together in the kitchen. My son and oldest daughter have the same round, big, beautiful blue eyes. Their father’s eyes. June’s eyes were different, smaller. Like mine. She had my eyes. Collectively as a family, we represent a few pieces of June’s puzzle, but without June, the puzzle will never be complete. I’m forced to live with this. I must find a way. I think about how several pieces of her puzzle are permanently imprinted on various people in our household. Pieces we can never lose. I look forward to watching our son’s teeth grow in and fall out. I’ll see June in and around him when they do. I’ll wonder if his adult teeth are what June’s would have looked like. I’ll see her when he smiles. I know that despite having lost June, she will never be lost.

In September,

ten days after my thirty-eighth birthday,

two days after my mom’s sixty-first birthday,

two days after Bella’s thirteenth birthday,

twelve days after my Nana’s ninety-fourth

birthday,

and

twenty-one days after my sister’s thirty-sixth

birthday,

June will turn three.

We will have a cake in celebration of her life. She won’t be sitting at the table with us, but she will forever be one of us. Forever a part of the September birthday tribe. Perhaps she’ll be at her own birthday table next to her great-grandmother and our dog Bella, who are also in heaven. When I think about it, birthdays are an earthly creation, so I’ll hope they don’t have other plans and decide to join us instead.

My living babies will blow out June’s candles. As I look at them in amazement, I’ll imagine June wedged between them, exactly where she belongs. My son will smile with excitement as I pull my daughter’s hair back so it doesn’t get caught in the flames as she puffs her cheeks and leans in for the big blow. For a fleeting moment, I’ll see and feel June alive again in both of them. As I let the vision of her go, and I return to reality, I’ll remind myself September is just a month and it’s almost over. It didn’t kill us this year. We will live to see September again, but in the meantime, I’ll be keeping an eye out for another piece to June’s puzzle.

June Helen Jarboe (September 22, 2020 – March 13, 2022)

June’s Deepest Dive

A month ago I watched a Netflix film called The Deepest Breath. It’s a perfect analogy for the darkest part of June’s treatment. A feeling I’ve been unable to put into words. It continues to haunt me for reasons I want others to understand, and for reasons I want to forget.

For days after watching the film, I could not shake the feeling it gave me. I sat alone with the feeling and when I tried to describe it to others, to not be so alone with the feeling, I fell short. I decided to let it go, but it kept creeping up on me. While picking up toys off the living room floor or standing at the kitchen sink washing dishes. It’s addictive, so I’d pick up more toys. I’d hand wash dishes out of the dirty dishwasher, just to stay, standing, in the feeling a bit longer. I relate to it. I like it. It brings me back to when June was alive because it’s a feeling I experienced so often. I wonder if I’m truly ready to let it go.

I don’t relate to the desire to dive. I can’t hold my breath underwater for more than a short five seconds. I don’t like swimming. I’m fearful of the water. A doggy paddle is my best stroke.

The feeling I am talking about is one I imagine the free divers have every time they commit to diving the line. I’m referring to fear, but not just any fear. It’s a familiar fear. More specifically, it is the fear of going to the edge of death and then coming back, just as the free divers do in the film. Just as June did throughout her treatment.

“The way I’ve heard it described,” the clinic nurse said to me before June’s first stem cell transplant, “is that they bring them to the edge of death and then slowly pull them back.”

“Oh.” I said. This was entirely too much to contemplate. “June has to come back,” I said.

A feeling of knowing overcomes me as I watch a free diver valiantly swim and then glide into the depths of the ocean. I feel the pain their parents must experience every time their child takes the deepest breath. Three-hundred and fifty-seven feet without an oxygen tank, a voluntary weight in hand helping to pull the diver deeper into the sea. They dive along a cable because it’s easy to become disoriented. Holding their breath for more than three minutes, they kick until the darkness disguised as lightness carries them to the bottom of the weighted cable. The devil disguised as God. To the edge of death and back.

Over and over. These divers choose to do this. Their parents, if asked, would choose they don’t. Now, I choose to watch them. It is reminiscent of watching June. The terror. The anxiety. The perpetual panic. Throughout treatment, I watched June brought to the edge of death and return. Much like the diver, she changed every time she sank into the abyss and resurfaced. It was notable upon her return. Her eyes dimmer. Her smile weaker. Physiologically she was more disabled than before she went. Before she went in for surgery, went in for another round of chemo, went in for stem cell transplant, went in for radiation mapping. Every dive deeper. Every dive more dangerous. The damage irreversible. June did not choose this. We, as June’s parents, chose this for her. We lowered the cable. Treatment disguised as the cure. To the edge of death and back.

I wish I knew where June went during her dives. What her mind told her every time she went under anesthesia, every time a doctor cut into her on a table. Did she go to a space filled with darkness or lightness? Was the edge of death peaceful like the divers described? Was it quiet? A place beyond pain? Where did the pain stop and euphoria begin? A line I cannot delineate because I was not beside her during her deepest dive. I was waiting on the surface. I am only June’s mom. I could only watch her take the deepest breath. I couldn’t take it with her or for her, as every parent at one time or another wishes they could.

As June’s mom (Mama to her) I watched June take the deepest dive. I cheered her on. I waited on the surface with my hands tied counting the seconds on the clock. Praying she would resurface. The medical responders diving to meet her on her way back. Their hands also tied. She’d have to do this alone. For herself. I’d dip my face into the water in anticipation of her return. The water was blurry and the salt stung my eyes. Did I bring goggles? Meaningless thoughts as the panic set in as the moments slowly ticked by. Nothing I could do to speed up time or change the outcome.

Before each dive, before handing her off to a stranger disguised as a nurse, I kissed her goodbye like it was the last time. I’d hold her warm little face in my hands. I’d inhale her sweet breath. We’d lock eyes. Then I’d wait. At the bedside. In the waiting room. On our living room floor cradling her lifeless body. From the surface, I’d wonder every time, was she coming back or had she gone to the edge and beyond?

Our First Lifeline

Two weeks after the tumor was biopsied and June diagnosed with cancer, she went in for a second surgery. A surgery to place a central line. If you’re anything like me, managing and caring for the last little bit of the umbilical cord before it turned black and fell off my newborn's belly button was enough of a worrisome task. I constantly fretted, did it catch on the onesie while I pulled it up to change their diaper? Oh no, there’s blood! Do I clean it? Just soap and water, right? Where’s the hospital paperwork with the instructions? Finally, “Oh, shit! Where did the belly button go? It’s gone.” I’d find the last little bit of black umbilical cord as I was sorting darks from lights and loading the washer. That was it. The end of the worry. “Should we save it?” I asked husband as I dropped our firstborn’s scab in a Ziplock baggy. I envisioned one day stapling it to her baby book.

Caring for a central line was similar to caring for a newborn’s belly button, in a few ways, however. The initial anxiety it provokes in a parent is similar. Questions like, “What am I supposed to do with this?” and “How do I take care of it?” arise. You’re advised not to submerge either in water or they can be a source of infection. With June, we were sent home with the clamp still attached to her umbilicus because of a massive clamp removal shortage due to Covid. “They’ll remove it at your first week appointment. Just be aware of the clamp, so not to rip it off.” The nurse said as she read our discharge instructions. Worrisome? Nah. Like a central line, you’re afraid to touch it, know you must clean it, but can’t seem to bring yourself to even look at it.

There are aspects of a central line that don’t compare to anything else. Unlike a belly button, you can’t ignore it until it goes away. Quite the opposite, you nurture it for it’s and your survival. For a mother of a child with one, a central line becomes a baby of its own requiring individual care apart from your child. You must bathe your child once daily to prevent infection. Again, if you’re anything like me, you loathe a daily bath. One or two weekly scrubs are good enough for this mom. A central line requires weekly dressing changes in clinic only for itself. It requires twice daily saline and heparin flushes performed by caregivers, like moms or dads. A central line is a lifeline. Ironically, a central line, when not properly cared for, is also a death line. I carried the weight of June’s line with us everywhere we went.

As June received her central line, a Broviac-Hickman, husband and I were given a one-on-one course in June’s hospital room on the care it necessitated. A nurse practitioner gave us a handbook which she instructed we take home and keep in an accessible place. It was a handbook she suggested we study, and if not, keep close because we may have to refer to it on a regular basis. I had yet to open the pediatric cancer textbook that was given to me the week before when June was diagnosed. I imagined this one joining that one on a back shelf in a dark closet. However, that was not an option, I soon came to learn. The line that entered June’s chest cavity wall and curled up above her clavicle, protruded from her dainty neck and dipped back down into the subclavian vein, positioned perfectly next to June’s heart demanded I read the book. To keep June alive. “Keep it out of and above her diaper line,” was one of the last warnings the nurse practitioner instructed us on. 

June received weekly blood products through her line. Chemotherapies and adjunct medications were administered through her line. The line prevented her from being poked multiple times, every time, we were in-patient at the hospital, or out-patient at the clinic. There are many challenges to placing an IV in an infant’s vein, something I quickly came to learn and dread. To avoid holding a baby down and sticking, sticking, sticking them with needles until their veins, arms and legs are bruised black and blue, is to be victorious. They won’t consequently lay limp in your arms afterward, exhausted from the fight, not understanding why adults torture them. You won’t have to cradle your baby in your arms noticing the remainder of their fight visible in the small pools of tears on the examination table. The smallest victories carry the greatest significance in the daily life of a child and their parents going through cancer treatment.

When we took June home, we were forced to accept the burdensome and newest member of the family. I carried the dense handbook up the stairs and pushed open the closet door in the kitchen. I slid the book onto my new, hidden bookshelf and shut the door behind me. I walked back downstairs to greet June and my husband as they came through the door. Welcoming our new babies home, I so carefully unclipped and lifted June out of her carseat. She squealed in pain. I carried her up the stairs and into her room. Gingerly, I laid her down on the changing table. Slowly and carefully I lifted her tiny shirt. There it was, a Broviac-Hickman double lumen central line. Double lumen means there are two ports of entry. Double lumen meant double the care.

That night a large cardboard box was delivered to our front step filled with heparin and saline flushes, green antiseptic caps, alcohol pads, gloves, and yellow Kelly clamps. I placed each supply in an individual bin and slid it onto the shelf in the closet in the kitchen next to the handbook and pediatric cancer book. I took one small bin of mixed supplies upstairs to June’s room where I organized them on her changing table. I placed one set of Kelly clamps in the visible tray on June’s changing table, one in the silverware drawer and one in her diaper bag. If June’s line should get caught on something and tear or break, Kelly clamps would (amongst other things) prevent air from entering her vein, a potentially fatal consequence. They were the extinguisher to the fire. The tourniquet for a wound. Kelly clamps might save her life. I tried not to think about it too much.

The next time I undid June’s diaper to change it, I noticed the lumens sitting inside of the diaper. My eyes darted for alcohol pads. I tore several open and began to ferociously “scrub the hub”. Has anything entered the lumens? How could I possibly know? I can’t see microscopic bacteria! I’ll have to wait and watch for signs of infection. Oh no, please, no, don’t let June get an infection. I couldn’t live with myself putting her through something else. I tried to tape the lumens up, away from her diaper. I stuck an adhesive clip at her midline and fed the line into it, snapping it closed over the rubber tubing. Several days later, the adhesive started to break down June’s skin. An angry open sore became visible at the edge of the tape. In clinic we brainstormed other ways to finagle the line away from her diaper. We tried moving the clip to a less angry and red area of skin. Temporary relief.

June went to the bathroom and I’d panic as I unbuttoned her onesie. Sometimes the line would fall out of the clip and hang outside of her onesie and I’d panic. Every time I set her down on her playmat, I’d feel for her line. Before I lifted her up, I’d check for the placement of it so I didn’t pull on it. I feared she might pull on it. The line was a constant, nagging stressor. June depended on it to complete the next eighteen months of treatment, but I couldn’t envision how it would survive those eighteen months.

I Googled “How do you secure a central line from coming out of baby's clothes?” and a few sites populated. What I didn’t expect to find was that something existed for this exact problem. It’s called a CareAline which, amongst many things, included a wrap designed specifically for central lines. Specifically for children. Specifically for children with cancer. I reread the site. There is a community of people out there making things like this for children with cancer. I clicked on all the links. I scoured every page. I watched the videos on the website. It was the very first moment I had realized I was not alone. There were others. Other moms with children with cancer. Other children like June with neuroblastoma. There were people paving a path for those of us who are suffering our first steps on a road where the obstacle is the only path forward. It was as if I was on mile twenty and exhausted but really the race had just begun, and suddenly in the distance there was someone holding a sign with our names on it. They had water. They were making sure we weren’t running this race alone.

I purchased several CareAline wraps. Immediately, the wrap reduced my concern for infection and provided me with great relief. June’s line sat securely inside the wrap and was no longer threatening to dive into her dirty diaper, or fall out of her clothing and get caught or torn by little baby hands, or by mama’s big hands as I lifted June’s fourteen pound body for the one-hundredth time in the day. 

In the last year after June died, I’d find the CareAlines in drawers or boxes of doll clothes. Scattered throughout the house. My older daughter used the wraps on her babies when we no longer could wrap them around June.

Several weeks ago, I volunteered at a bereavement retreat our family attended last summer. As I was leaving, I walked outside, and saw a couple standing on the porch. We exchanged hello’s. The man saw the photograph of June I was cradling in my arm. He told me she reminded him of his daughter. They shared the same beautiful and deeply wise eyes. We started chatting and the topic of support groups for bereaved parents were at the forefront of the conversation. The kind and gentle man mentioned to his partner standing next to him that they should add a particular group to their website.

 “What’s your website?” I needed to know.

 “It’s spelled Care-A-line,” she explained. “We offer PICC sleeves and central line wraps for kids…” I could no longer hear what she was saying and with no restraint interjected.

“You make these?” I asked.

“Yes.” They responded.

Here I was, standing with my community. They didn’t know it yet, but they’d been part of mine for years.

When I was alone with my baby and her new cancer diagnosis and her new line and the new books on the shelf that felt like concrete when I’d pull them out, in a vast world turned eternally dark, I was offered a hand. In the hand, was a wrap. I took the wrap, and pulled June into me placing it around her tiny chest. I slipped her double lumen into the little pocket that was perfectly made for it. Then I made dinner for the first time in a long while because I didn’t have to keep such a close eye on June. As I stepped back from her sweet self set up in the wrap, sitting on the playmat, she smiled at me. I smiled back for the first time in a long while and said, “June, we got this baby. We got this.” And for the first time since the doctors told me she had cancer, I believed it. 

Enjoy It While It Lasts

I’ve been reflecting on the topic of discussing my children with strangers since my last post. A few days ago, I was reminded of another common phrase people say to me when I am in public with my son and daughter which is, “Enjoy it while it lasts.” I learned something from this phrase this week.

My children and I were sitting on the white sandy beach two miles from our house, the tide high, which is my absolute favorite time to bring little children to the beach. The skinny shoreline is only a couple of steps to the water which is convenient for several reasons including cooling off. Since my kids are still quite young, and my oldest is afraid of crabs and sharks, they only enter until about waist deep. This equates to them staying within a five foot radius of me at all times. It allows me to lean back and get comfortable in my beach chair. I steal a quick casual couple of photos to remind myself we actually made it here without Daddy. I crack a can of seltzer, which my daughter refers to as bubbles and place it in the cup holder on the side of the chair. I retrieve a book from my bag. I never read more than a couple of sentences, but you get the picture. There’s lounging involved in going to the beach with a four and one year old. I’m not chasing after them. I’m not throwing whatever is in my hands into the sand, like my book or phone, when it’s low tide and I see my son taking off toward the water, already a half-mile down the beach. 

The flip side to the high tide is that it allows little space for anyone to squeeze by us without having to veer into the water and get their feet wet as they search for an opening to sit on the sand. People pass by and my son and daughter and all of their toys push the strangers further into the icy inlet. Surprisingly, I feel unencumbered by this, unlike I once did. Before I found June’s tumor, this sort of thing, like being an inconvenience to others, really bothered me. I strived to be everyone’s greatest convenience. Oh, you need me to work extra shifts? No problem. Oh, you need me to stay late? No problem. I will set my chair in the prickly dune grass so you and yours can walk by me while my children play up here where I am pretty sure it’s illegal to sit or play because of the endangered piping plovers, but no problem. Enjoy the beach!

That was the old me. After your child becomes sick, you lose your identity, and what I only recently learned is that you lose all of it. It was nothing I considered when my identity first disappeared. I sat distraught staring out hospital windows at the miniature cars and people below, ruminating about where and when I’d find it again. Had I realized that you also lose the parts of yourself you’ve spent most of your life trying to get rid of perhaps I wouldn’t have been so concerned. For most of my adult life I’d diligently sat on a couch week after week talking to a therapist. I was thousands of dollars deep in therapy in my early twenties, a time I could barely make rent, let alone a single fifty-dollar monthly payment toward the interest on my student debt. Convinced I’d never change. I was destined to people pleasing and doomed to failure for the rest of my life. Big thoughts for a seemingly small person. Eventually, with hard work, I became someone I could tolerate. Then the atomic bomb of childhood cancer was dropped and there was nothing. Deafening silence. The body and mind were simultaneously freed of who I once was. For better or worse, my identity was inhaled by the billowing black mushroom cloud above. Poof. 

Ten minutes after unfolding my beach chair, laying out towels, dumping a canvas bag of sand toys and all the sand we brought home last week, and stripping down to my bathing suit, a woman unfolded her beach chair three feet away from me. I noticed she was watching my son push a plastic yellow dump truck in the sand. With soft eyes and a gentle smile, she looked at me and said, “How old is he?” I was waiting for this. 

“He turned one in May.” I was relieved to hear my voice calm, confident, and unwavering. Not the slightest hint of the brittle, tearful voice that sometimes leaks out.

“Ah, all three of my grandchildren are May babies as well. Two of them are twins.” She nodded in the direction of the three playing in the water just in front of us. “Enjoy it while it lasts. I thought when I was younger, this feels like forever, but really it goes so fast. Now I wish I had the constant little voices. The house is so quiet.” 

I’m familiar with the quiet. I can also feel it in our house. I know what it’s like to have and to no longer have. I know exactly how it feels when it goes by so fast. I can see the quiet when I look at my two remarkable children, and there’s a silent uninhabited space between them. A space their sister would roll around in and fill with giggles if she were physically here. I think about forever, and smile wholly at the woman as I consider all of my children, here and gone. I feel my inner self floating into the memory of June’s deeply wise celestial blue eyes. I know exactly what this woman is talking about. For the first time in a long while I feel a connection with a stranger.

“It does go by fast.” I whole-heartedly agree. “I enjoy every moment.” For the first time in a while, I don’t feel insulted by a strangers comment. I don’t feel like I need to share June with this woman. In that moment, we share a deeper level of understanding. I imagine the sense of loss she felt when her children grew up and left the home she had carefully crafted around them for almost twenty years. I imagine so much of her happiness and fulfillment also left when they did. The phrase “Enjoy it while it lasts” is poignant. I see a reflection of this woman and her life in her words. As mothers, in our individual ways, we both know and truly understand that nothing lasts forever.

How Many Kids Do You Have?

“How many kids do you have?” 

I get asked this often. It’s a question I have struggled with since June died. When asked, I still don’t know what to say. My jaw drops and I’m paralyzed over this jarring question. I never respond with the same answer and it’s not because I’m out of practice. There is just no right answer. Nothing I say aligns with what feels right. No response I have to this question ever feels good. A consistent internal struggle. A need to sort it all out. A question I’ll be asked for eternity. My response is twofold. I must protect myself and also honor June. By saying I have two children, I omit June and I lie. I can feel a wet ball of anxiety climbing up my throat to the back of my tongue just behind my salivary glands. It’s tempting me to cry. By saying I have three children, I open up room for more questioning which could potentially expose her truth and ours. Depending on who I am speaking with, I may not want this exposure. I may not want to be vulnerable with the woman standing behind me in the grocery line who’s impatiently watching me feed my children snacks in between unloading the groceries onto the conveyor belt. There exist these times when I desperately need to hide behind the response, “I have two children.” Either way, I am at a loss. June’s physical absence is tangible every time someone asks me “how many children do you have?”. 

I liked this question before June died. I was proud of the little humans my body magically created, and I loved talking about them. Still do. They fascinate me on many levels.

It begins every morning, when I first look into their eyes. I see something bigger than myself. I realize I am learning as much from them as they are from me. Their beauty is all encompassing perfection which spills out of them into their surroundings. I am so fortunate to live in these very surroundings. Naturally and passively, I soak in their energies. At times, I carefully curate our interactions, aware of the influence I have as their parent. I allow it to be a children’s world, and as long as they’re safe, I’m just living in it.

I contemplate the first words I will say to them every morning. I choose my words carefully. Words that I can pour into them, just as they unknowingly pour into me. I crack open my son’s door and peek my head inside grinning ear to ear. I say, “Good morning my sweetest boy!” in the calmest, and yet most enthusiastic voice I have. My eyes widen when our eyes meet to reflect his great pale baby blues. He is standing in his crib, gripping the edge, awaiting this moment. He begins jumping up and down. Squeaks of the most joyous dolphin-sounding laugh fills the room. I scoop him up, kiss his cheeks, hug his little body close to mine, and sit down with him in the rocking chair. He drinks the warm bottle of milk I’ve brought him while I breathe in his sweet sleepy smell. He’s splayed comfortably across my lap. His sister joins us because she has been up for an hour already, painting at the dining room table, eating breakfast. She climbs onto my lap and lifts my sons legs over hers. She takes the bottle in her hand and rests her head on my shoulder. I place my arm around her. She whispers to him as she feeds him his bottle. He giggles and chokes, giggles and chokes, yet somehow manages to drink it all. Our mornings when we first wake are quiet, gentle, and cuddly. A slow crescendo to breakfast which we inevitably arrive at and where everyone is talking, laughing, yelling, running or falling down and crying. 

I love talking about my kids. I hope the question of how many I have will eventually become easier. I don’t fault anyone for asking. One day, I may be able to tell a stranger that I have three children without welling up with tears and possibly when only two of them are standing in front of that stranger. I don’t foresee the heartache going away any time soon, however, when I see three kids and a mom together. Or when the oldest two are girls, and the youngest a boy.

Recently, I was asked a different question. A single question I often get when I’m in public with my two kids. Also one that almost always comes after I’m asked how many children I have. A woman looked at my children and asked me how old they were. “One and almost five.” I responded with a terse smile to insinuate I wasn’t up for a chitty-chat. “Wow, they are almost four years apart. You are so smart. My kids were twenty-two months apart!” She could only see what was in front of her. She couldn’t see June. She didn’t know my eldest daughter has a sister who was just twenty-three months younger. “Yeah, wow!” I pretended to be impressed by how this woman could have managed to raise two children only twenty-two months apart. But the truth is, it is hard. I feel for her. Maybe it’s not what she had planned. I get that because I too, had other plans.

Triggers

In a casual conversation last week with a group of friends, someone mentioned MIT. As in, Massachusetts Institute of Technology. A school that every lower middle class kid from New England has heard of, next to Harvard and Yale. At some point, starting at a very young age, we have all been lectured by our elders on the importance of securing a scholarship to attend one of these schools.

MIT was a school I had absolutely no relationship to, except the relationship of knowing I would never have a relationship because I could barely add two numbers together without first drawing a picture of the numbers. Somehow in grade school, I already knew MIT wouldn’t accept someone who drew five dots and seven dots and added each dot together to make thirteen dots. Or twelve or whatever.

Now when I hear the word MIT, it’s like some latent virus rearing its ugly head. I didn’t know it was there, working around the clock, binding to my cells. Now I am symptomatic, and the symptoms are expressing themselves as flashbacks of the MIT campus. Not because I ever made that scholarship and attended MIT, or even had friends that attended MIT. Instead I had a drive-by relationship with MIT at the age of thirty-six. I drove through the Cambridge campus every day, several times a day when June was being treated at Boston Children’s Hospital on the way to a hotel for a bit of reprieve.

I now know the way to the hotel in Cambridge from Boston Children’s by heart. This is the second time I have stayed here. It’s June’s first time. We were here only a month ago for several weeks during her tumor resection. The first time I drove by myself to the hotel there was bumper to bumper traffic. After I crossed the bridge into Cambridge, I sat in traffic and watched kids with backpacks walking in groups, crossing the street. Must be a school, I thought. Moments later I saw a sign that said “MIT”.

Triggers come in all forms. Prior to this day I had no idea the mention of MIT would cause me emotional dysregulation. Driving through the campus was as meaningless to me as someone mentioning I’d needed a scholarship to attend it when I was ten.

Now, here I am. Someone has mentioned MIT and suddenly I’ve secretly and politely withdrawn from the conversation. I continue to nod my head. The person doesn’t realize I am no longer listening. I’ve become very good at this, but not because I want to be. I’ve checked out and I am in my brain, in my car, driving across the Charles River, to a hotel that exists just beyond the MIT campus. I drive past a little bagel shop that sells bagel sandwiches named after things only MIT students understand. A place on many mornings I’d pick up a coffee and bagels for me and husband before heading back to the hospital. A place where I’d sit on some oversized leather chair and enviously watch all the kids joyously socializing over lox and lattes, while I waited for our food, to-go. They reminded me of when I was a kid. A period of time I never desired to return to, but now felt more appealing than ever. A time that existed in the before. The before pain. The before anxiety. The before June’s diagnosis.

Every time I arrive to the hotel my mind takes inventory of the obstacles separating me from the hospital. MIT, the Charles River, various restaurants and bars, Massachusetts College of Art and Design and several tunnels, in that order.

At any given time, the main lobby of the hotel is crawling with people in suits. In the morning business people drink coffee in white paper cups and mingle. I wonder if they all actually know one another or are meeting for the first time and are just that friendly. The thought of traveling for work and having new, unfamiliar, encounters seems like an utterly alien existence to me.

Just in front of the elevators is a large restaurant which has no walls, except one tiny divider separating the elevators from the restaurant. A bar wraps around the room and is the focal point of the restaurant. It turns an electric blue at night. In the evening, business people sit at the bar in blue tinted suits and drink martinis after conducting business. They look important and sexy. I see my reflection in them, small, frumpy, exhausted.

I attempt to push June in her stroller, feed bag pumping, tube running into her nose, as quickly as possible past the restaurant, to behind the divider, and to the elevators. I have bags crammed under the stroller and a big suitcase I’m dragging behind me. I’m four months pregnant and besides the growing fetus, I feel completely void of life. June’s just finished a fifth round of chemo. She’s spontaneously throwing up. We made several stops on the way down to sop up throw-up out of her carseat. I envy the people in suits, and I try not to stare. We don’t fit in, so I cover June in her stroller to protect her from things like Covid and the wandering eyes of happy, busy people. I pray she doesn’t throw up in the lobby. I imagine sitting at the bar and drinking a martini.

My body aches to go home, but we are here for June’s transplant workup which consists of two daunting days filled with back-to-back appointments. At the end of it, we will have seen fifteen different specialists. Each specialist is going to deliver me news about June’s organ function. After five rounds of chemotherapy, do her kidneys still work? Is her heart still sufficiently pumping blood? How much hearing loss have her tiny developing ears suffered? We wait in fifteen lobbies spread out on the sprawling Boston Children’s campus. In each we are surrounded by kids and their parents. I wonder if any of them have cancer too. I fight back tears and hold my breath every time a nurse comes out to the waiting room to call our name. Soon, a doctor would read me the list of irreversible damage the chemo has caused. Soon, the feeling of never being the same would be confirmed in these new diagnoses. Soon cancer wouldn’t be the only chronic ailment on the list. I didn’t want to know. I was afraid of knowing. I cried when the news was bad. I sobbed when the news was good. “Great news, June’s eye sight is perfect,” the optometrist said.

If you’d asked me before June got sick, I could never have told you how to get to Cambridge from Boston. I didn’t realize the Charles River separated the two. My father once lived in Cambridge. I remember him quizzing my sister and I as we passed water, “Name that river!” and without hesitation I’d try to beat my sister to the punch and yell, “the Charles!”. I remember thinking it looked brown. I remember disliking it. I also disliked the city. The loud noises, the heat, the people. I felt like a single grain in a fifty-pound bag of rice. The city felt as if it could swallow me whole. Every time I’d visit my dad, the Charles River was the first reminder that I was no longer home.

The first time I left June and husband at the hospital to return to our hotel room in Cambridge, I was alone. I didn’t want to leave her, but there wasn’t room for us both to stay. I was nine weeks pregnant with our son. Husband suggested we alternate nights in the hotel so that at least one of us was getting rest, every other night. Before the sun started to set, despite it not being the end of our day, husband and I took turns gifting one another an end to the day. On my days, I’d reluctantly leave the hospital room after rehearsing the notion that it was probably best for me, for June, and for the growing baby in my belly. Care for June didn’t end when the sun set, therefore sleep when possible was important. When most people are placing their babies and children in their cribs or beds at night, and retreating to their own bedroom to relax, we were often just beginning our night. There were medications and fluids to be administered. Vitals had to be taken every four hours. The nights echoed beeping pumps and alarming monitors. June’s heart rate would drop and the monitor would scream. June’s oxygen would dip and the monitor would scream. I’d jump out of bed. Concerned. Delirious. Barefoot on the hospital floor. Trying to see June in the light of the beeping machines. The nurse would hurry through the door, assess June, and turn off the alarm. Relieved she was okay, I would hush her back to sleep, rub her bald head and say, “It’s alright, close your eyes and go back to sleep baby.” She would close her little eyes and roll to her side. She’d pull her pink blanket up over her head which was my cue to return to my bed. A half hour later, the same thing would happen. All night long, the machines screamed, and I ran to June, heart pounding, half-asleep.

For several weeks, every other day while we stayed for June’s recovery after the tumor resection, I’d drive to the hotel in Cambridge. The first stretch of the drive took me past a beautiful strip of restaurants with outdoor patio seating. Big lit up signs hovered above beautiful people who were standing on sidewalks in skimpy summer attire, smoking cigarettes or vape pens, mingling with friends. I’d always think, “Maybe when June is better, we can come back, just the two of us and enjoy a carefree weekend here.” Me and husband. Although, living carefree was a distant, unattainable way of life. I imagined I’d never feel carefree again as long as I lived. I’d reach for the box of tissues that lived on my passenger seat. I’d wipe my eyes until they were raw. I’d arrive at the hotel, park, and sit in my car, take deep breaths, cry the last of my tears, then make my way to the hotel lobby.

In the hotel I’d walk past beautiful people, feeling haggard and broken. My eyes cast down because I don’t want them to see that I am a thirty-six year old woman and I don’t know who I am anymore. Their suits, again remind me, they know who they are. I quickly enter the elevator and press the button. I stare at myself in the unforgiving elevator mirror and curse God, and then beg him to take me directly to my floor without any other stops. I can’t bear to see one more person. I finally reach my floor and dart in the direction of my room. I find my door and fumble for the key. I swipe the key. I enter the room and collapse on the inside of the door as I bolt the top lock. I turn and look at the room. It’s empty. My bag is on the floor where I had left it the night before last. Clothes are strewn out of it. The curtains are open, which I immediately go to close, but before I do I stop and stare at the people on the street. I look out to the other rooms across the way. I wonder if they too have locked themselves in. Probably not, they all seem relaxed, almost carefree. I’ll never forget how that once felt.

I flip the bathroom light switch on. I take off my dirty, bile stained hospital clothing and drop it on the white tiled floor. I turn on the shower and catch myself in the mirror. I examine my growing belly. It feels much bigger when I am wearing pants, but it doesn’t appear that much bigger now that I am looking at it. I stare at my bloodshot eyes and wonder, how will I get through this? How will I survive? How will I keep a baby alive inside of me while trying to keep my baby alive inside the hospital? I decide I don’t need all of the answers right now. Just a hot shower and a bed. I allow the water to burn the skin on my back. I scrub my body like I’m scrubbing stuck burnt spaghetti out of a pan with a Brillo pad. I can wash off the hospital, but I can’t wash away the anguish. I try anyway. I rub a little bottle of hotel lotion on my flaming red body so I don’t crack, and put on clean pajamas. I slip into bed and it’s only six o’clock, but my body tells me it’s done. I see a mini fridge next to the tv, and suddenly, I have an appetite. I open the fridge and there’s one half-full mini can of ginger ale husband must have brought back from the hospital last night. I close the fridge and feel cold water splatter my feet. Yuck, I think. I don’t have the energy to figure out where the water is coming from. There’s no puddle on the floor, so I forget it. I lay back down and close my eyes. I toss and turn all night long because my body and my mind cannot be at peace. They won’t settle. June is in the hospital. June has cancer. June has had a major surgery that she may never recover from. My brain and body won’t let me sleep because they are trying to solve all of life’s problems. They are trying to figure out how we are going to overcome all of this and survive. I tell my body it can’t figure it out tonight and to go to sleep, but my mind won’t listen. All night long, I am running to alarms and being swallowed by the Charles River.

The Day Bella Died

I want to get up and go outside, but I can’t move. I want to lay down and sleep, but I don’t. Not because I can’t, but because I picture laying alone in bed and staring at the ceiling like I did for so many days after June died. The feeling is almost the same, and it has flooded my body once again. I’m afraid of feeling this feeling more. I think the feeling I am talking about is grief. I already carry so much grief, it doesn’t feel like I could carry anymore. I try to pack it into a tiny little box and shove it away in hopes it won’t bother me. In the box, I stuff the memory of Bella’s sweet face, her salt and pepper hair, and ears that were just as soft as the day I took her home as a puppy.

After Bella passed peacefully in the grass behind our house, I sat next to her, petting her body, still warm. The vet palpated her stomach searching for an answer to Bella’s suffering. At the risk of sounding completely psychotic, I said to the lovely vet,  “I’d like to just snip one of these ears off and keep it.” The look on his face made me realize I was probably the first bereaved pet mom that has ever said that. Quickly, back-peddling, I assured him I was only joking. And I was, sort of. People keep rabbit feet for good luck, so I was thinking perhaps an ear wouldn’t be too much of a token to keep. The truth was, I just couldn’t imagine never petting Bella’s perfect ear’s again. For the rest of my life. This was it. I was going to have to live without Bella and her utterly perfect, satiny, black ears because they were being taken too. Ears I had examined so many times for ticks or lumps. Ears that reflexively shuddered when I reached out to touch them. Ears that perked up when someone walked through the door.

I’ve spent a lot of time walking through the house muttering “I just can’t believe she’s gone.” Every turn of a corner reminds me of her. When I come home and the house is quiet, I’m reminded she’s not here. To carry on with my life, I have to find some good in Bella being gone. The only good I can actually think of is that she’s no longer in pain. That’s something that is positive and good. It also hurts because it reminds me that before she died, she was in a lot of pain. She was taking medication for it, but nonetheless, she was in pain. It’s a reminder that for many months, Bella lived while actively dying. It reminds me of June. The memories of June dying are now closer to me than they have been in a little over a year. Today time does not exist. It doesn’t seem fair or right or just. June is gone. Now, Bella is gone too. Twelve, almost thirteen, glorious years spent together. The two of us kept one-another company when there was no one else around.

Bella has seen so much. She lived with me through years of milestones. Bella was two when I met my husband, she was five when we got married and bought a house. Bella was seven when our eldest daughter was born. She was almost nine when June was born. She was almost twelve when June died. She was almost twelve when our son was born. Bella was the only constant when we brought each of our children home from the hospital. She was there to greet them first. She met all three of our children before anyone else did. She was gentle, loving, caring and protective of our family. 

Now I am here, on the same stained navy blue couch I sat on for months after June died. I have a cabinet with various medications for Bella. They sit in the same cabinet I kept June’s medications in.  Bella’s food sits in a Chewy box next to the door. It arrived yesterday and I haven’t unpacked it. I’m wondering if they’ll take it back. I don’t even want money, I just want someone to come take it out of my house, like the nurse did with all of June’s medication and tube feeds after she died. These trinkets of memory physically won’t go away until they are removed. I can’t remove them. 

I don’t hear Bella’s nails on the wood floors when I walk to a different room in the house. Bella won’t be laying on the bath mat outside of my shower door anymore. She won’t be the first one I talk to when I wake up in the morning. She won’t be the last face I give a squeeze and a kiss at the end of the night. I no longer need to rush home from whatever I am doing to feed Bella or to let her out. I won’t need to make plans for her when we go on vacation in November. Bella is no longer part of my physical life, but still her bed sits on the floor at my feet. Every so often, I bend down and smell the corner of it. I breathe in her scent, just as I did with June’s clothes after she died. Scent eventually wears off, so I keep the bed close by. 

The finality of death is just that. It’s final. It’s the most final part of life. It’s the only final part of life. Death is something I’ve spent hours and days of my life trying to understand, but death is elusive. I’ve learned some things about death in this last year, but only in relation to death, not really about death itself at all. Is death the culmination of everything we have experienced in life? The grand finale? A final montage presenting to us all the good and the bad we have endured or inflicted upon others? 

I’ve learned that there is a gaping hole left behind when someone in our life dies. The hole is symbolic of a place that someone once inhabited. Sometimes, there is more than one hole. A hole in the brain where continual memories, feelings, and emotions can be drained into. It’s more of a sinkhole. One that constantly begs for more. So you feed it more memories and flashbacks, but it’s never satisfied and keeps you stuck. Death leaves a hole in the heart that will always exist and never be filled by anything else. I imagine my brain and my heart by the time I am old. Holey. The rewiring of veins or neurons has occurred throughout my life, so I could keep on living, very holey, sometimes lonely, grief-filled days. 

I often wonder why my elders don’t talk more about death. Perhaps they do, amongst themselves. Or perhaps they don’t. I don’t know. It’s not that I care to talk about it all the time, but I’d like to hear what others have to say about the loss they have suffered. Perhaps because I would feel less alone in the loss I’ve suffered. When someone shares with me that they have lost someone they love, it brings me a great knowing that I did not have. It creates a warm connection that before did not exist. When someone shares with me they lost something they love, I can see the holes in them and for a moment it feels like they’re shining a light into mine. When someone not only shares that they’ve lost someone they love, but they share how much that person meant to them and they smile as they reflect on that person, I can feel the love they had for that person. It is in that moment that I realize what it means when someone says love is never lost. 

I’ll probably still instinctively call Bella at the end of dinner, when my son’s high chair is surrounded by a million little bits of steak, carrots, and potato. I’ll say “Bella! Come clean up the mess!” and then look over at my daughter sitting at the table eating her dinner, now staring at me wide eyed like she’d seen a ghost. I can imagine her little voice saying, “Mama, are you coo-coo? Bella went to heaven.” I’ll smile too because her smile is infectious. I’ll remember that I can always get away with calling Bella to clean up the mess because I am just a coo-coo Mama. I’ll probably use this one again. I put it in my back pocket. This is the beginning of creating new memories with Bella. Just as we have done with Junie.  

Now that Bella is gone, I have to carry her with me in a way that feels just as physically backbreaking as lifting her seventy-five pound body into my car last night to take her and the kids on one last trip to her favorite place on earth: the beach. I feel the weight of her life on top of me. I know this weight will shift and become more evenly distributed as the time wanes on. I want it to, but I don’t. I was Bella’s chosen mother and forever I will honor her life and her memory. I will carry her with me until the day I die. I’ve said this about June before, but I’ll say it again, when I reach the pearly gates I will call out June’s name and now, I will whistle the biggest, wettest lipped whistle, and say, “Boochi girl! Mama’s home!”. 

For Bella

Bella, our black boxer-lab mix has come to the end of her life and is receiving hospice care. I was a meager twenty-something year old when I purchased her for two-hundred and fifty dollars nearly thirteen years ago. I drove to a farm in a town in the middle of nowhere Maine to pick her up. The last of the litter. I cradled her in the palms of my hands where she fit perfectly at eight weeks old. I was in disbelief that she was coming home with me. What would I name her? I belabored this topic for weeks.

If I had no one in the world, I had this perfect puppy. The first great responsibility of my life. As I carefully carried her in my hands to the car, a little girl ran out from the house next to the barn. “Her name is Bella!” She yelled. “I named her after the girl in Twilight. You have to keep it. Promise me you won’t change it!” She demanded. Who was this girl? Did she do this to every person who picked a puppy from the litter? Wasn’t every dog named Bella? Then I felt a bit of relief. If I did name her Bella, I would never be responsible for deciding what to name her. It felt like the enormous burden had been lifted. I looked at the little girl and told her honestly,  “Sounds like it’s settled then, her name is Bella.” 

Bella spent her first car ride home in a little ball on my passenger's seat terrified and shaking. She didn’t move. I was already fretting. Would she like living with me? Where would I take her to play? Should I let her sleep on my bed or try to crate train her? Would she miss her mom? I had to make sure there was no possible way she would miss her mom.

The moment we pulled into my apartment parking lot, and I put the car into park, she threw up in my cup holder. That’s how Bella and I began our life together.

As I write this she is laying in our backyard on the long summer grass in the shade of a tree, panting heavily, refusing to eat even the sweetest, most peanut buttery of treats. She’s still drinking water, but it almost comes out of her as fast as it enters, resulting in many accidents all around the house. I’ve rolled up the only two sort of nice rugs in the house and left them in the corners of the rooms they once blanketed: the playroom and our bedroom. A reminder every time I walk into one of these rooms that Bella is going to die soon.

June came home on hospice. After she died I thought, nothing will ever be this painful. No death in my life will ever hurt as much. I now had a steel coat of armor that no other death could penetrate. No other death could cause me harm. Turns out, I was wrong. No death will ever be as painful as the death of a child, at least for me, but other deaths still hurt. A lot. 

Losing Bella in the wake of losing June feels cruel. It feels unfair.  It’s something I must navigate for my four year old daughter after losing her sister. I worry about her the most. So I read the literature. I try to say the right things. I probably say the wrong things. I embrace all of her emotions, and tell her everything is going to be alright. I tell her that Bella loves her and that we love her so much.

Bella knows all three of our children. To them, she is their oldest sister. When Bella is outside and the kids and I are upstairs in one of their rooms playing and we hear her whining at the front door to be let in, I always say, “Oh Bella!” Because I likely forgot I let her out twenty minutes before, and yet, she faithfully stays and waits patiently at the door no matter how many times I’ve forgotten to let her back in. I scoop my son up and tell my daughter, “Let’s go! We have to let your sister in.” Our son knows the word “sister”. It’s the word he whispers as we walk through the house past photos of June. It’s the word he whispers as we walk down the stairs to the front door to let Bella in. 

This week Bella will likely join her sister in heaven. Our daughter and I talk a lot about Bella meeting Junie. “Junie won’t be alone anymore,” she told me this morning. She’s so wise. Then she says, “Well she has God, but now she will have Bella too.” And for a moment, I feel so much relief. 

Bella, Boochi, Boochi girl, we love you so much. You are the embodiment of our family. Give Junie lots of licks when you see her. She is going to be so happy to see you.

Finding Happiness

Yesterday, I walked by the Echo which sits between the toaster and the blender on my kitchen counter. Normally, it displays the time and temperature with an icon to reflect the weather like the sun, but this time it said, “Smoke Daddy’s Brisket”. I stared at the screen. I was on my way back to the sink to return the strainer I emptied in the garbage. One of my daughter’s favorite things to do. She gently and lovingly taps it on the inside of the trash can liner, meticulously eliminating every bit of shredded cheese, every crumb, and every last strawberry stem. I don’t have time for that, or the patience, so I slam it against the trash can, and rinse the rest down the drain. Now, I’m staring at the Echo with a strainer half-full of soggy wet food dripping down my arm, in complete disgust.

Alexa has been known to write fairly offensive messages on the screen of my Echo, however this particular one eclipses the rest. Not only because it was utterly insulting, what about Mommy’s Brisket? But because it forced me to openly acknowledge the guilt I have been suppressing since June died. Once in my life, I had been a good wife. Once I had enjoyed cooking. Once I didn’t mind cleaning. I actually liked vacuuming until June got sick and we did it every day as part of our routine, killing time before the neverending hours of the day killed us. Then one day I woke up and she was gone, and my passion for the roles I’d once fulfilled were gone too. Now it’s been a little over a year since she died, and some things I used to enjoy have started to return, like my short term memory. I remember things again, more often than not. It’s a convenience more than an enjoyment. I can retain information. I can study for an exam and pass. My memory is intact. Sort of a relief because it was gone for a long, long time. Other things have yet to return, like my love of cooking for my family. 

Nevertheless, I spend the majority of time when I am home and awake, in the kitchen. Emptying lunch boxes before they get moldy, scrubbing the endless million bits of water and baby bottles with a bottle brush before they, too, grow mold. Flicking curdled lumps of milk out of the tip of the bottle nipple with the tiny brush that unscrews from the bottom of the bottle brush. Inevitably, I always bend and break it. Wiping out the refrigerator which somehow is always filled with my or my daughter’s hair. How is the refrigerator a vortex for hair? I spend mornings and evenings bathing my kids in the kitchen sink, so I don’t have to do the backbreaking work of bending over a bathtub to wash my daughter's long, extremely tangled hair. I only do it once a week because it takes forty-five minutes from start to finish. Doing it once a week is likely where my problem begins and ends. First we apply the shampoo and perform a solid scalp scrub to free the sand and dirt from the previous week's preschool playground adventures. Next, the conditioner, which needs to sit in her wrapped hair on the top of her head for at least fifteen minutes if we are going to have any chance of brushing out the knotty dreads that have formed in the back. Finally, the painful wet brushing. It’s not painful for her, the wet brush is a miracle tool. The wet brush has saved my hair brushing relationship with my daughter which was on the fritz for many years. The wet brush allows me to place bristles on her head. It’s the act of me using the wet brush that’s painful. Instead of ripping through the snarls, as I’d much prefer, it gently glides over and around them, which results in me working on one patch of tangled hair for ten minutes. At the end of it, my right hand, arm, and brain throb. But that’s okay because at least for those ten minutes, she played in the sink with her dolls. She only screamed once, and never tried to push or swat me away. 

The rest of my time in the kitchen I spend packing and unpacking lunches, making various meals, several at one mealtime for different people, plus endless snacks in between for the kids. I wipe up crumbs off the kitchen counter ten times a day which fall from thin air. 

Sometimes, I do things I enjoy in the kitchen like stand at the kitchen counter and write. I like to do all of my newspaper reading in the corner of the kitchen, near the medicine cabinet, while my family is in the living room playing games or watching television. I sneak off to the corner, where no one can see me, and peruse the local paper before hearing “Mama! Can I have some strawberries?” Perfect, I am conveniently leaning on the refrigerator. “Sure, hunny, one minute!” Which buys me thirty more seconds to finish the article I’m reading. I spend a lot of time complaining to husband how I no longer enjoy cooking, but do it anyway because people in our house need to eat. Maybe this is where Alexa gets the hairbrained idea I should smoke a brisket. Course I should! I live in my kitchen, where mom’s dutifully smoke things! As if I even knew how to smoke something other than a cigarette. Alexa, what makes you assume I know how to smoke something? You have no way to track my tobacco sales from age sixteen to twenty-six, sorry, that was before your time. I don’t smoke anything. 

The kitchen is the room I live in in our house. If the kitchen is neat and tidy, the rest of the house can be a dumpster, and I'm happy when my head hits the pillow at night. If there’s a sliver of a grape or a peanut butter spoon in the sink when I wake up, God help me. I equate the cleanliness of my kitchen to the level of happiness I will achieve when I wake up for the day. If the sink is empty, but hasn’t been scrubbed out from last night's dinner, I'm starting out at a ninety–five percent. If there are dishes that magically appeared overnight, remove another ten-percent, and I am starting my day at eighty-five percent. 

The morning after the evening June died, I woke up and I felt zero percent. Zero percent alive. Zero percent happy. The same percentage I imagine one feels when they no longer want to live. I imagine this is what it feels like to die from a broken heart. To flatline from grief. I’d never heard of someone dying from grief, but maybe I’d be the first. Although, I figured there had to be more, so I looked it up. Google didn’t mention others, but told me the emotion of grief can be linked to cardiac damage. I believe Google because I can feel grief wrapping itself around my heart and it hurts. I can feel a reminiscent charge of energy that still illuminates my heart, but as it turns out it’s only the static energy left over from the last couple years of suffering. It’s an energy I’ve tried so hard to eliminate before it kills me, but it sticks to my insides like a plaque. My heart wants to stop pumping blood because it knows June’s heart no longer could. A couple of paddles to the chest, a futile attempt to bring me back, would do nothing, but shock me into a deeper level of despair, loneliness, and hopelessness. I spent every day half-alive in this dark place for months and months after June died. Every person around me inadvertently reminded me of how very much alone I was. How no one could ever truly imagine or understand what it was like to lose a child to cancer. 

My belly continued to expand despite how lifeless I felt. It reminded me of why I had to claw myself out of this dark hole, eventually. If I couldn’t find a reason to live within myself that would tether me to this earth, I needed to find an anchor outside of my body. My children were the anchors. 

I opened my heavy eyelids on a bitterly cold March morning, and stared at the bedroom ceiling. We had been up all night with my older daughter who threw up her entire bedtime snack of strawberries and yogurt around midnight, in our bed. Husband carried her to the bathroom leaving a trail of pink and red chunks behind them as I followed rubbing her head, dodging the debris. Upon entering the bathroom, she promptly threw up right in front and to the right of the toilet, splattering the vanity which I hadn’t cleaned in months and was littered with toiletries, old makeup, toothbrushes, globs of toothpaste, and tarnished jewelry. June had taken her last breath only hours before and now my living daughter, albeit with a stomach flu, was sick too. My nine-month pregnant body, swollen and exhausted, had nothing left. After changing our daughter’s pajamas, bringing her a bowl to continue to throw up in, laying a towel down on our bed, and draping a wet cloth over her forehead, I lay down next to her and cried myself to sleep.

“How can I live life when I wake up void of happiness? June is gone, how can I ever be happy again? I’ll never be happy again.” I told my therapist. I had no desire to procure happiness, but deep down I knew I needed it to continue on with my life. It terrified me. I’m going to die a miserable human being. People will remember me and say “It’s such a shame. After her daughter died, she just stopped living and then she died.” It was a constant push-pull I couldn’t escape. It tortured me. I wanted to keep living, but I didn’t know how to live without happiness.

I sat for months in my misery because I had no other choice. I was paralyzed with grief and nine-months pregnant. I gave birth to our son and then returned home, still paralyzed with grief, and now up all night again with a baby. I had sunken to the bottom of an olympic size swimming pool of grief. Through the clear blue water I could see the faces crowded around the edge of the pool looking into the water, trying to figure out if I was going to be okay. Is she breathing? Will she ever be the same? I could hear muffled voices yelling out to me here and there, but I couldn’t make out what they were saying. I lay very still. Blinded by the light from above, trying but not really trying to make out the blurry figures. Unable to move. 

Then suddenly, I woke up and a microscopic part of me yearned to be happy again. I could feel it. A feeling other than grief. It felt strange, but I was interested in feeling it more. It also felt like a betrayal to June and disguised itself as guilt for me, so immediately I pushed it away. Then I woke up one day and decided I had a choice: I could succumb to the anguish, but I’d live a short miserable life. Or, I could see what it felt like to get in touch with that distant desire to be happy. Suddenly, the number of years I lived became of importance again. Not all at once, and not indefinitely, but here and there. Day by day, I didn’t give up. I dedicated myself to watering and feeding that seed of desire to grow into something bigger than me. I became hopeful again. I realized happiness is not betraying June, unhappiness is. I know June wouldn’t want me to live a life of turmoil. What if she’s watching me from heaven as I have a complete temper tantrum? As I throw away all the good that’s left in life, after she herself didn’t have the blessing of counting her years on earth? 

Very recently I had my first taste of happiness I know I can take with me everywhere. It is a happiness no one can take away from me. It’s both big and small at times, but it has stayed and never left. I’ve created it by sitting in my misery and rediscovering who I am and what I love, and what matters most to me. Part of it involves my relationships to all of the things in my life that give me my identity. Something I lost when June became sick. I’ve started over. I’m in charge now. I’m carefully crafting my new identity based on how I choose to live my life, today. I am choosing to be happy. To my marriage, I am a wife. To my peers, I am a friend. To my parents, I am a daughter. To my in-laws, a daughter-in-law. To our house, a homemaker. To my children, I am eternally their mother. Nothing will ever change that. I learned that by embracing all of these roles and doing them with love, I can be myself, and that usually the relationship is reciprocal and the love is returned. I learned that despite losing June, I still have life and in that life there will be happy moments.

During June’s treatment someone once said to me, “Without joy there is no pain and without pain, how can we experience joy?” and I thought, “Oh my God. You’re right.” It seemed so simple, yet so provocative. I’d never experienced pain on this level. The good moments were magnificent, and the bad moments, excruciating. It was a high and a low I’d never known existed.

Today, I know I will always feel eternal pain surrounding the loss of June. I now know that I will also feel immense joy, unlike any joy I had ever felt before June became sick. The exciting part of this for me is that immense joy comes in small unexpecting packages like when I peck twenty kisses on my son’s perfect little round cheeks, or when I smell my daughter's sour, earthy hair before the big scrub. Maybe I wouldn’t have acknowledged these as gifts before. Maybe they would have passed me by. The childlike lens I see life through again might be temporary, but then again, it might not. I’ve also discovered new joys that never struck me as anything but a chore before. Despite cooking no longer being something I enjoy, I do love placing the meals in front of husband and the kids and hearing the echo of everyone’s special requests: more water please, can I have lemonade?, we need another fork, a napkin, more noodles please! I sit down to eat my own dinner well after they have finished and for some reason, this makes me happy. It reminds me of my Nana who never ate with us. When we started our family, I set the expectation that I, as the woman, wouldn’t be left in the kitchen to eat a cold dinner. But that mentality made me resentful when I saw everyone eating without me. Now I let it be messy, and disorganized. I know the second I sit down to eat my almost cold dinner, because now my kids are on to other things, that my son will crawl over to me and pull at my shorts and throw his arms in the air because he wants me to pick him up. I push my meal aside and place him on my lap. It’s not that food isn’t important, it’s just that the food isn’t the most important. It’s simply the conduit to everything magnificent I am about to experience. 

The Chair

My favorite routine with my kids is bedtime. Perhaps, not for the reasons you may expect, like total exhaustion from chasing the kids around all day, or just craving a little peace and quiet. Don’t get me wrong, I am one-hundred percent completely exhausted and craving peace and quiet, every day, but this routine is more about the ritual. The moments leading up to placing my son in his crib are moments of connection between me and him, despite what may have or have not happened throughout the day. They are similar sacred moments like those I’d once shared with June, in the very same room, in the very same rocking chair. June’s room, now turned into our son’s nursery, has two of June’s items that once belonged to her, and were passed down from our eldest daughter: a faux white pine mid-century modern crib and a gray suede rocking chair. Despite them once belonging to our eldest daughter and now belonging to our son, my subconscious has decided both the crib and rocking chair belong solely to June. My son is simply borrowing his older sister’s things. He won’t ever return the crib or the chair to her, but instead allow them to simply exist when he is done with them, to remind us of what once was. They are clear representations of June, and the proof is in the flashbacks they trigger in me daily. 

For some awful reason, and one which brings me so much guilt, is that those objects also remind me that it’s easier to love June at times, than it is to love my living children. When I make the acknowledgment that I have been giving June too much of my brain and my body in one day, I return to the beautiful babies in front of me. Sometimes the lines however, are blurred between them and her. Sometimes their mannerisms are identical to their sister who is gone, or one of them gives me a look that’s just like her. Because I never want them to believe I only think about their sister, and because I never want them to think they are walking in her shadow, I carefully choose the precious times that I say her name out loud. As a knee-jerk reaction, my daughter immediately says, “Don’t cry mommy,” and I look at her, eyes wide open to prove to her that June is a safe subject, and that the mere thought of her doesn’t cause me to cry, every time. “Besides,” I tell her, “Crying is therapeutic. It’s good for us. It’s the release of lots of mixed energies and emotions that our bodies want out. Crying can help us feel better, even lighter, in our bodies. Did you know that?” But I know, she doesn’t care, she wants her mama strong, and when I cry, I become weak and it makes her uncomfortable. I don’t want to ever make her uncomfortable. But it inevitably happens, I cry and then I watch her insert her thumb into her mouth, and I think “Goddamnit. What have I done again?”. Recently, I’ve been practicing bringing up June in moments of joy, when we are all laughing as a family, or better yet, I let my daughter bring June into our shared time. “Mama, Junie used to do that.” She randomly says. I give her a big smile, agree, and stave off the tears. I want her to know that with me, she is always in a safe space to talk about Junie. When I am able to, I mold myself to make her feel more comfortable.

June and I spent most of her life together sitting in a chair. Either a hospital room chair, or a chair in our house. In the weeks following chemotherapy, she would be too sick to move, entirely lifeless in my arms. Unable to lift her bald little head or open her pale blue eyes. So, I’d stop everything, and sit with her, cradling her in my arms. We wouldn’t take our hourly walks around the house, picking up toys, looking out the window, dancing to music in the kitchen. We would stay very still on the plush, pale yellow chair in our living room. I’d sing to her, rock her, keep her warm under the pink blankets that her great-grandmother had hand-knitted for her. She’d lay for hours, not moving, barely breathing. With extreme worry,  I’d call the nurse for the second or third time at “clinic”, the children’s cancer clinic, to make sure I was doing everything I possibly could to nurture June back to health. Was she making wet diapers, was she consuming fluids, was she tolerating any food? These were the common questions spouted off in the first thirty seconds by the clinic nurse. “Yes, no, no.” I’d tell her, reaching defeat, as we hung up again. I knew it wouldn’t be long before the first question became a no as well, so I gently stood up, June in my arms, and carried her to our medicine cabinet in the kitchen. I’d pull out the bin of hydromorphone, Motrin, Tylenol, Zofran, Benadryl, SSKI drops, GCSF, and various sized syringes and needles as well as three thermometers, one forehead reading and two internal reading thermometers. If one thermometer screamed fever it wasn't proof enough that we needed to go to the hospital, and I’d methodically take her temperature twelve more times, rotating devices and spots on her forehead, just to be sure. 

I’d pull out the largest syringe I had in the bin, sixty milliliters, and fill a water glass. Then I’d draw sixty milliliters of water, sometimes mixed with a pedialyte powder, into the syringe, all while balancing June in my arms. I’d tiptoe back to the living room, and slowly, we’d slink back into the yellow chair. Then I’d begin administering the fluid to June. One ounce every hour which was roughly thirty milliliters at the end of the hour. The tiniest trickle of water could make June gag and throw up, which would be counterproductive to hydration, and frightening for her. Every ten to twenty seconds I’d dribble a couple more drops into her mouth. I’d become so hyper focused with keeping her alive that I’d often forget to breathe. We would bank one hour of hydration success, followed by a massive episode of throw up in the second hour. Usually, I could predict the oncoming puke, and I’d run to the nearest sink and hold her tiny little body over it. By the end of the day we were surrounded by towels on the floor, and covered in vomit. We would sleep for a couple of hours, and every morning we’d start over, hoping for it to be a bit better, a bit easier, but usually it was the same. The neverending days felt like a month in a day, the seconds and hours ticked by without any hope in the near future of living differently.

After every round of chemotherapy, and for roughly two weeks, this is what we did. I can’t remember where my daughter or husband were, but daycare and work feel like safe assumptions. I stayed home with June. I kept June alive. You know that mostly terrifying feeling when you first take your brand new infant home from the hospital and don’t know what to do next, but know you’ll sacrifice your own soul to keep them alive? Keeping June alive felt sort of like that, magnified by one million. 

In the evenings, we would switch from the yellow chair in the living room to the gray chair in June's room, and I’d rock her for an hour, nursing as much of a bottle into her as she would tolerate. Sometimes an ounce, sometimes two or three. Never more than four. We had two great adversaries preventing proper nourishment: the tumor which was the size of a grapefruit and had pushed aside vital organs, leaving no room for June’s stomach to expand, and the nausea from the chemotherapy. I’d imagine what June’s insides looked like, and I’d curse the tumor. Then I’d gently rock her until I felt like she was no longer in danger of retching the bottle. I’d rub her little bald head until she was asleep. I’d continue relishing every moment with her, still rocking, crying silent, stoic tears out of fear that if she heard me, it would delay her healing. That somehow the sadness the tears carried as they dripped off my chin and onto her cheek, neck, arms or hands, would seep into her skin and make her more sick, or sad, or not want to do this anymore. Maybe my tears were enough to make her give up. It was one of those beliefs I took on after too many days inside the house, and inside the hospital. I shielded her emotionally and physically from my tears. I decided it was better if she didn’t know how much I was also suffering.

When I’d sit in June’s chair, in her room, and rock her when she was well, it was something altogether different. She’d giggle and look up at me. She’d turn her eyes to the ceiling and smile, showing off her big beautiful white teeth, and throw her head back into the crook of my arm, flashing just under her tiny chin, a jaw, and the most tender, translucent skin. I’d crane my neck to nuzzle my nose and mouth into the little folds of skin where there had once existed a double-chin, and now, only a pocket of fat and a rigid jawbone. It was my favorite view. Maybe because when someone throws their head back, smiling, laughing, it’s in pure ecstasy. As if there couldn’t be a care in the world. For one second, I’d pretend there wasn’t a care in the world.

With my son, our bedtime routine resumes, much like it did with June and with little time in between each baby. Eight weeks. Lately, he’s not ready for his seven o’clock bedtime, which means he’s really ready. One second after I close the bedroom door, he’s silent. 

We begin our routine by sinking into the gray rocking chair which is a little more broken-in now than it once was. His head rests in the crook of my arm, his legs sprawl over mine, and he starts to guzzle his bottle. Once finished, we rock a bit more because selfishly, I am not ready to let him go. In response, he becomes squirrely. Snuggled in his sleep sack, he manages to hoist himself up to a standing position, arms firmly wrapped around my neck, standing strongly with two feet balanced on my thighs. He peeks curiously upward, over my shoulder, out the window, and squeals with delight at the rustling leaves on the trees. Flashing me the most perfect baby chin of which I have a front row seat. I am looking up from just beyond the orchestra pit, and he’s on stage. I’m in heaven. I feel pure energetic bliss as the light filters through the trees and into the window, casting quivering white designs on the wall. The same designs a kindred light once made for June. I nuzzle my nose upward into the folds of his little neck. His skin is the most satiny, milky thing I’ve ever felt, and I inhale its scent deeply into the pits of my lungs. He giggles just like June once did, as I kiss his chubby, tender, under chin. He casts his big blue eyes down to meet mine, and it’s in that moment I realize, I will go on living. 

I picture an eighty-five year old self, dragging the gray rocking chair out from the attic to the farmers porch out front of our house. Husband, reluctantly, allowed me to hold onto it all these years because he knew. He knew if it went away, so did a slice of my memory. A slice of my being. The chair is now fifty-years-old, and slightly faded, but otherwise it has not aged. I have aged. My hands are sprinkled with white spots from the sun where the melanin has died. My hair is long still, but it’s white and wispy and reminds me of freshly rinsed soap suds as they swirl around the drain. I sit in the gray rocking chair and reflect on my life. I rock, just like I did once with my three babies. 

I remember the day my mom showed up with the chair in the back of her pick-up truck fifty-years before. “What is that?” I thought, looking at it in the driveway from the window on the second floor of our house. Running out to meet her, I blurted “No footrest?” Then in an effort to repair any unintentional damage, I said “Wow. I love it. Thanks mom.” We hauled it inside, the two of us. I was several months pregnant with our first daughter. The moment it was in the nursery, I sat down, leaned back and rocked in it. I imagined what life would be like once she came into this world. What husband and I would be like as her parents. 

The eighty-five year old version of me is closer to June than I have been in forty-eight years. I am content. My life has been both grueling yet rewarding. I have lived in the deepest depths of sadness, and surfaced, to sink back into the depths again, and to rise up once more. I’ve realized there is no permanence about these places much like life itself.  It hasn’t been easy. I am the only eighty-five year old in my neighborhood with a one-and-a-half year old daughter. I’ve carried June with me every day since she has been gone which is how I believe I’ve grown to be this old. As I rest my tired body into the gray, sunken chair, I do it again: I lean back, start rocking, and look down at the crook of my arm. I picture her little chin and pearly whites and I say to her, “Mama’s going to be home soon, Junie.” I close my eyes, the wind sifting lightly through my hair, and as I picture her face I know, we have never been apart. She’s always been right here. I’m looking forward to what the next one-hundred years bring.

Home

I lived my days in the brain, the car, the home, and for periods of the day, on the treadmill and in a glass of red wine. The home was my most burdensome place. It had once represented our family, a beautiful chaos, bursting at the seams with love and adoration for the little humans my husband and I had created, together. Then June became sick, and the house stopped feeling like home, and eventually started feeling like a prison. The four powdery walls of every room, once recognizable, now symbolized the opposite of what we had cultivated here, the opposite of love. The house facilitated an us versus them mentality, the outsiders versus us, the insiders. The outsiders were the lucky people enjoying life in the outside world oblivious that June and other kids were dying of cancer. 

The more days we spent confined to the house watching the cars drive by on their way to work, the store, or the beach, the more we were reminded of what our lives once were, and the angrier I became. “What do people have to do that’s so important, anyway?” I’d think to myself as I looked out the window for the hundredth time that day watching the seemingly carefree cars pass by full of families laughing and singing, with their healthy kids buckled blissfully inside. I’d look down at my sweet June perched on my hip with her bald head and sunken eyes. The divide had become a canyon. Us, the sick ones imprisoned here inside, and them, the healthy ones free to roam wherever they so choose. We became lost in a new, ugly, and painful chaos. I longed for normalcy. I prayed for June to get better. Our old life had become a distant memory. 

I kept June safe by not leaving the house. At the start of June’s treatment, it was summer, the month of June. Her immune system started taking a hit, so we reduced our family’s exposure to indoor environments which was relatively easy. Instead of eating inside the restaurant, we opted for the picnic table outside. Simple and not overthought. Instead of meeting a friend at their house to play, we met at the beach. No one was longer allowed in our house with the exception of a few family members, and on occasion, completely vetted and healthy friends. I didn’t do temperature checks at the door, but handwashing was mandatory. But then something shifted. As we gained momentum with chemotherapy, suddenly, I became obsessive over summer colds. Covid, a constant, nagging worry, became an uncontrollable animal that kept me up at night. Everywhere I looked, there was illness. Surfaces harbored diseases. Everything was contaminated. I stopped going to the grocery store, and with no other choice, finally took the advice of a former coworker to try grocery delivery. The groceries started showing up at my door. The little indiscriminate car would pull into the driveway and June and I would peek out the kitchen window as we always did together. “Groceries are here, Junie!” and then we’d go sit on the living room floor on the playmat, and hear, thud, one, thud, two, thud, three, thud, four, thud, five, thud, six, then silence, and I knew it was safe. I knew the person who had left the groceries had gone and wasn’t going to get June sick. “I think that's all of them.” I’d tell her so to prepare her that I would be stepping away from her for several minutes. So she wouldn’t panic. June did not like when we were not physically bonded, neither did I. I’d walk away listening to her protest in the form of whines and shrieks filled with sadness and anger, trying to quell my own panic, as I opened the front door. I could see the car backing out of the driveway. I’d throw my hand in the air while I bent down and picked up one paper bag. I’d hold it there for a couple seconds until I heard them drive away, to express a thank you, a token of gratitude, for someone who did something so personal for me. A person who delivered the nourishment my family needed to survive the inside world. I’d carry the groceries inside, then wash my hands. I’d spray the paper bags with Lysol, then wash my hands again. I’d let them sit on the kitchen floor until I felt like it was safe to touch them. Then I’d unpack them, and wash my hands. Like this, we lived our lives inside.

Then fall and winter came. The brutal cold accompanied by days of endless gray, ice storms and colds. The flu, RSV, covid, the random stomach bug, and the common cold were our undying enemies. Our oldest daughter, three-years-old at the time, was still attending daycare several days a week which made being inside the home very dangerous and uncomfortable. There was no longer anywhere we could go and be safe from sickness. Simultaneously, there was an uptick in June’s hospital admissions. We were no longer only there for just the weeks of chemotherapy. We were there for surgeries, dehydration and fluids, neutropenic fevers, and for weeks of antibiotics when the infections started. June’s little body was so frail. We didn’t know if her immune system would be able to fight any additional sickness. As her mama, I did my best to envelop June. So often, I’d wish she could just get back inside the safety of my womb. I did my best to recreate that environment by forming a protective bubble around her with my body. Before each hospitalization, I laced up my combat boots to fight the invisible enemy. It didn’t take long however for the invisible enemy to become one with the people we constantly encountered. I began to fear every new person who walked into June’s room. I’d watch carefully, did they sanitize before entering the room, could I hear a scratchiness in their voice from behind their mask, did they have sick kids at home? I’d pull June in closer to me. 

Our family’s life in isolation was lonely. Our home, no longer the place I longed to return to at the end of the day. Instead, I'd sit and stare at the walls for hours, while crawling out of my skin. Light filtered in and out, and from a distance, I watched the seasons change. The leaves turned red, brown, orange and fell off the trees. The white snow blanketed the branches after a storm. When we were in the hospital, it was much the same, just another place I was imprisoned. In order to survive, I had to completely detach myself from the outside world. I had to make sure it meant nothing to me anymore. I pretended it didn’t exist. I completely cut myself off from the things that once had brought me joy, but now made me painfully sad, like hanging out with friends. All that mattered was June. I’d go from the house to the garage to the car to the hospital entrance. I’d take two or three puffs of icy air between the car and the hospital entrance, and then I’d settle back inside for an indefinite amount of time. A week or two, or four. This wasn’t the home or way of life I imagined giving my children. Ceasing to exist wasn’t exactly how I pictured my life as a mom. I was no longer the role model I always wanted to be for my girls. I didn’t know who I was anymore. Every day I woke up, and so it didn’t hurt quite so much, I worked on continually numbing myself from the inside out.

Sometimes, I envision what June’s home is like now. I know it’s better than this, and I also know I gave her the best home I could. Early in treatment, a nurse said to me, “You are June’s home. No matter where you two are, as long as she is with you, she is always home.” In hindsight, I believe that the nurse's words were the exact reason I sacrificed my outside life. So I could fully and solely exist as June’s home, and so that June could survive another day to live in it.

When I handed June over after she died, and after I’d held her as long as I could, I felt like I was telling her through the action of giving her to someone else, that I was no longer her home. The absence of her felt like I had partially severed an artery. Physiologically it was something I needed to repair in order to survive, but I had no choice. There was no fine silk or needles to sew the tear. I’d have to figure out a way to live without it being repaired, in order to keep my life. That’s what it feels like living without June. 

Today, my body is no longer the same home June and I once shared, but it will always be a home for all of my kids to return to. Our physical house is the same as when June was alive, but it’s no longer a prison. Every day June and I were together and multiple times a day, I told her the only thing I knew to be real in the midst of our upheaval, and it still stands true today, “June, I am your mama, and you are stuck with me. I will never leave you. I’m always going to be right here.” I trust she knows that and will come home whenever she wants to. Junie, mama is right here. I will always be your home.

A Lost Identity

When June began chemotherapy, slowly, slowly, gone, went my identity. I became no one in society. I still had my nursing license, sure, but I’d stopped working the day we found out June had cancer. I could feel myself vanishing, recoiling, receding, retreating into the depths of the few new places I lived: my brain, the car, the house. Repeat. I’d spread my time between those three places, alternating, so if I was in one, I’d be escaping the other. After June was initially diagnosed, I couldn't escape the torture of my brain, however. It proved impossible. I was a walking brain. My older daughter would say something to me, and an automated response would come out of my mouth with complete disregard for the question or phrase she had posed. It had to be a vague response for it to work every time, so it was usually something like “Okay” or “Yeah” or “Sure”. Something that took little time and energy for me to spit out. Something that allowed me to continue to live in my brain and stay on my new path being solely June’s mom. A flippant response allowed me more mental energy to think about the next steps in June’s process. The next bit of nurturing she needed, or medication that was due. It allowed me to anticipate her every waking need, which I had decided was my job as June’s mom. My sick baby would never want or need for anything. That I could control.

I quickly learned several mechanisms to escape the wrath of my brain which I included in my everyday life. The treadmill and a bottle of red wine became two other locations on the list of places I now lived.  I was branching out. Not long after this discovery, I realized how much relief these things brought me daily which made them both the more appealing and more dangerous places to live. They were lonely, but so was I, so desperately lonely. Together we made good company, and although they only lasted the duration I was doing them, it added up to about three hours a day of half-quality, half-quantity relief. 

June was diagnosed May 25, 2021. By the month of June, I learned what it was like to spread my time out to the car. Our oldest daughter would be at daycare and June would be napping. I’d walk down the stairs to the garage in my pajamas at one o’clock in the afternoon, get in the car and start it, open the garage door, and drive out like I was going somewhere. I’d park the car to face the woods, the road, or the neighbors house. I’d attempt not to face the neighbors house, unless I was totally out of my mind and unaware of what I was doing as I was parking, which most times I was. Out of my mind isn’t an accurate description however because I was very much in my mind, and out of my body. Something I’d later figure out was a common theme. Something I came to learn to distinguish. I realized the chaos roaring inside of June’s little body was teaching me so much about my own. It was nearly impossible to be in both my body and brain at the same time, or even one of them, at one time. After June was diagnosed, I spent most days free falling from the ethers, waking up to find myself in the car, the house, but rarely the brain.

I’d sit for hours a week in the driveway, car running, dousing the planet with exhaust, crying. The ability for me to care about things that mattered before June got sick, like the planet, was none. I’d blast music, and I’d scream and I’d cry. I’d hit my hands off the steering wheel and curse God. If it was going to be one of those days, I made sure I was facing the woods. I’d grip the steering wheel so hard I thought I might rip the leather off, or worse, the entire wheel. I didn’t care. My cry was animalistic, hysteric, hopeless. Then I’d call the social worker once I’d let enough of the bear out. Once I was sure I wasn’t going to scare her, but not one second more because I couldn’t tolerate being by myself for another moment. I knew if I was scaring myself, I’d scare her. I’d get her on the phone and when she answered I’d say “Hi, how are you today?” in some foreign high-pitched cracked voice. Pretending. Pretending I didn’t just have the meltdown of the century in my driver's seat, sitting in my driveway, screaming at the leaves on the trees, ripping the steering wheel out of the car like some rabid, psychotic raccoon. The second she’d say, “I’m okay, how are you doing?” Cue meltdown number two. But this one was different. It was softer. It was heavy, hot tears without the screams. It was despair. I’d already released the anger. All that was left to come out was hopelessness. When you live in the bottomless bucket of hopelessness, what do you do? I’ll tell you. You claw your way out of that sucker because if you don’t, you’ll drown in that bucket void of hope, void of anything. You will drown in nothing but your own brain. The deprivation of hope will kill you. The only sure way out of the bucket of hopelessness is to fill it with hope. So, from the black unholy hole of hopelessness, I desperately started feeling around, for hope. I’d ask the social worker the same questions every time we spoke, “Do children with the same diagnosis as June’s go on to live? Can kids beat this type of cancer? Where are the other moms? Do you know any other moms that are going through this too? Can you ask them if they would be open to speaking with me? Is June going to die?” which was a rhetorical question because she didn’t have a crystal ball, nor was she a doctor delivering a prognosis, so without allowing her to respond, I’d say, “I don’t know how I will continue living if June dies.” Then I’d push the button on my car door that moves my seat as far back as it can go, and pull my one-hundred pound feet onto the seat, and cry into my knees. 

Pause. Then I’d continue, “I feel like I’ve lost my identity. I am no one anymore. I have no interests. I have no more hobbies. I can barely parent my oldest daughter. I’m definitely no longer a wife. The only thing I can do is be June’s mom. I am just June’s mom.” 

“Be just June’s mom,” she told me, “that’s all you have to be right now.”

With life on hold, our conversations went like this every week, several times a week, for months, until we made it through the first four rounds of chemotherapy. Then came the first trickle of hope almost filling my entire bucket: the tumors had shrunk.

Rainbows

A tsunami of fear overcame me several months after June’s death, shortly after the birth of our son. The grace period of fearless freedom which I had expected to endure forever, lasted approximately eight weeks, and ended abruptly, coinciding with the time between the death of June and the birth of our son. Thankfully my new found fearlessness covered the day of the birth which, against my will, was natural and unmedicated. He wasn’t ten pounds like predicted, a total relief, although I could feel all nine pounds four ounces of him on the way out. There are three words to describe the sensation of being unmedicated and on a table birthing a child: ring of fire. He came out weighing exactly two pounds more than his delicate eldest sister, and one pound twelve ounces more than June. 

Once my body expelled him, the nurses congratulated me on a healthy baby boy. Then they told me I did an incredible job pushing him out, and exclaimed “in almost record time!” “Oh, I didn't push.” I assured them. “There was no pushing involved, my body just wanted him out.” I rambled in utter astonishment “I wasn't even in my body!” In fact, during the process, the doctor said “Okay! I can see the baby's head, try not to push so hard.” To which I replied, “I’m not pushing!” as the very clear thought of “I’m totally screwed. Bring on the stitches” ran through my head. But my body knew what to do. The tear I sustained was far less than the two tears I had on both of my previously medicated births to daughters who weighed significantly less. Afterward, the healing process was also much quicker. I realized, my body knows what to do. The day it levitated off the birthing table I could hear faintly in the distance the anesthesiologist say “It’s too late now”. That was the day I learned it’s okay to be in and to listen to my body. It was a feeling I’d never had before. I’d spent so much time trying to run out of my body on the treadmill or jump out of my body during a HIIT workout or race out of my body down a slalom slope. I’d spent months after June’s diagnosis trying to self-medicate my body with ten ounce glasses of red wine every night, just to be able to stay in my body. Then my body proved to me it’s a safe place. It exists completely separate from my mind. It showed me it had everything in control. I just needed to sit back, trust it, and take in my surroundings. It was as I was laying on the birthing table that I watched the room fill with white light. In the moment, I thought I was dying, but fortunately my fearlessness hadn’t yet expired. “Take me.” I told God, “I’m ready.” That was the first time I'd seen the light. 

Many people told me that June would be with me the day I gave birth to our son. She would be present to protect both me and him. I wanted this so badly. I tried to envision her floating down from the heavens, but I couldn't. I didn’t have any physical proof of this being possible and my human brain, separate from my body, soul and consciousness, tried to lead me down the path of disbelief.

We arrived at the hospital on the hill. I reluctantly looked up at it from the passenger seat of the car. Normally, in everyday life, I try not to do this. I never look at the hospital. It’s too painful. I speed past it on the highway once a week on my way to therapy forcing my eyes to stay steady and straight ahead, in my lane. Other times, I pass it with my daughter in the car. She points to it and says, “Mama, look. It’s Junie’s hospital.” With an instant visceral ache, I always respond with the steadiest unsteady voice while keeping my eyes on the road, “You’re right, hunny. That’s Junie’s hospital.”

Today, on the day I will birth my son, eight weeks after June has died, sadness seemed to seep from the pores of the hospital's bricks. I am triggered, as usual. I’m trying not to cry the second we cross the threshold of the main entrance. This hospital harbors so many memories. June underwent half her treatment here. I had worked here as a student nurse, certified nurses assistant (CNA), and a registered nurse for the previous four years. I birthed our two girls here. In the basement of this hospital a stranger told me “June has cancer.” 

We finally arrived at the birthing floor. I felt like the Michellin Man in a flowery fuschia robe. Our nurse walked in. I didn’t recognize her, unlike so many other nurses at this hospital from years of working here. In the days leading up to today, I prayed that I would be surrounded by nurses I knew and people that would hold me close. Although, here I was. I wasn’t alone, but since June had died, I was more alone than I’d ever been. I sat and stared at the wall. I’d been here before. Twice. The last time was to give birth to June which was the most beautiful and sacred births of all my children. I pulled her out of my womb and onto my belly just as she took her first breath in her new world. Instantaneously, we were bonded. The most incredible nurse said to me, “I’m going to leave now, and you are going to do nothing but hold your baby for one hour.” June laid on my chest in the most precious, supple, pink skin of her life. We bonded for one entire hour before anyone else held her, including husband. In the weeks after we left the hospital, she would only allow me to hold her. She wouldn’t happily go to anyone else without first putting up a fight. Husband referred to it as the curse of holding the baby for the entire first hour of its life. I thought it was heaven. From day one, June was my heaven.

Minutes later the nurse who was to deliver our son returned, “There is someone outside who wants to visit, is that okay?”. I couldn’t think of a single person who would visit because no one was allowed. Covid-19 restrictions were in full force. I figured it had to be one of my nurse friends who caught wind I was at the hospital.

Just then the nurse who delivered June walked into the room. Before I could put two and two together, we were embracing. She told me she had heard about June and had been thinking so much about our family. She cried. I sobbed. I couldn’t let go. This is what it felt like to be held. It’s a similar feeling as when you're a child, and all you want is to be consoled by your mom or dad. You walk over to them and throw your arms in the air demanding they pick you up. I had turned into my six year old self again. Something about losing June has done that to me over and over again. “Can you deliver our son?” I desperately blurted out. She told me she was working on another floor that day, but otherwise of course she would have loved to. To June’s and my special nurse: Thank you for coming to visit me that day. June, thank you for sending your nurse when you knew I needed her the most. A full circle.

Six months after June died, we took a family trip to South America to visit my chosen family. I studied abroad in Chile in high school and lived with them as a foreign exchange student. They became the nuclear family I have never had. Thanks to technological advancements in the last couple of decades we have been able to stay close, despite the distance.

Isabel, my host-sister, is an energy healer. She performs energy work on clients in many different forms, primarily Reiki. She was taught by a Reiki master and she believes she is a portal which God can utilize to heal the human. She sacrifices her body in the name of God to help heal others on a daily basis.

I’m laying on the full size bed in her bedroom in a little house in the countryside of Chile. It’s summer time. The windows are open and there is a cool breeze coming from outside. I can hear dogs barking in the distance and see the sun setting just beyond the rolling hills out front. I close my eyes, and start to settle into the mattress. I take some deep diaphragmatic breaths. Isabel starts her energy work without touch. 

A couple of minutes into the work, I feel my body shaking. It’s the kind of shake just after you give birth naturally (medicated or unmedicated). The kind of shake that is coming from deep in the cells of your nerves. An uncontrollable, almost violent expenditure of energy. I felt as if I was falling off the bed. As if I was suspended in the air. I opened my eyes to make sure I wasn’t going to fall, and realized I was still laying firmly flat on the mattress. 

That’s when Isabel started talking to someone that wasn’t in the room. She was speaking so rapidly in Spanish, I couldn’t decipher what she was saying. It sounded like tongues. I caught bits and pieces of it, “Mama…you’re okay…it’s okay”. I was no longer in my own body. I started to panic, but I felt frozen. I opened my eyes to a bright white light above me.

Isabel stopped talking. Then she asked, “Did June pass away right here?” as she pointed to the space to the left of my ribcage. Ah, the home of June. The crook of my left arm. The area just below my armpit. The area just above my left hip. “Yes,” I told her, shaking. Teeth chattering. Suddenly, I was not only frozen, but I was also freezing. I had carried June on my hip her entire life. Eighteen-months. Carrying her during infancy waned as carrying her during sickness took over. Initially it was a struggle to carry her around everywhere, but eventually, I got used to it. I also became really good at doing everything with one hand: opening jars between my legs, cutting fruit and veggies with one swift chop! and June’s favorite, vacuuming. She was happiest on my hip as long as we were walking around the house sucking up dog hair, dirt, and crumbs. She became my fourteen pound extremity. We were glued to one another. I wouldn’t change that for the world.

Tears streamed down my cheeks. “Well, as you know, I carried June on my hip her entire life,” I told Isabel. “Then she passed away right here,” I pointed to June’s home. Isabel’s eyes filled with water. “Her energy is tattooed on your body, right there.” she said. Just then the entire room broke out in rainbows. The most perfectly shaped miniature rainbows floated all around us. Unsure of myself, I asked, “Isabel, do you see those?” pointing to the air, half-expecting she’d say no and think I was out of my mind, but then she said matter-of-factly, and without hesitation. “Yes, I see the rainbows.” We sat for a moment in silence and astonishment watching the rainbows hovering around us. Then slowly they disappeared, and tiny white orbs started to appear. Isabel and I sat there and stared at them in complete awe. ‘Isabel, I saw a white light. Did you?” My body was still shaking. It was difficult to speak. “No, but I heard a little girl’s voice. She was frantically saying, ‘mama, mama, mama, mommy, mommy, mommy, mama’”. I tried to calm her down. I told her, your mama is here and she misses and loves you so much. Your brother and sister and daddy are here too, and we think about you every moment. We love you so much. I told her it’s okay, you'll be together again soon. I told her I love her. She started to calm down.” 

“Tell me, have you ever seen the white light before?” Isabel asked.

Just then it dawned on me, “Yes, the day our son was born.”

Waiting Rooms

We have three children altogether. Four, if you count the miscarriage I had at nine weeks, before our oldest daughter was born, which was nearly five years ago. I call her Alice. 

The phrase, “God only gives us what we can handle,” is one commonly spouted to mom’s who have lost a child to cancer. A complete cliche. A  “fill in the awkward silence” type of comment as you stand facing one another both respectfully crawling out of your skin. Tell me, but why did God give me this? I mean, did it really have to be something this horrendous? Couldn’t it have been a broken wrist, maybe a cast? Maybe one or two nights stay in the hospital, but two-hundred? Tell me God, why a tumor? Not even a small tumor, why God, was the tumor the size of a grapefruit? Tell me again, how has God hurt you? What is your threshold for what God thinks you can handle? I’m guessing a child with cancer didn’t make that short list.

Typically, the message is delivered with empathy and comes from someone who hasn’t lost a child to cancer or otherwise, and has little or no experience with the subject. To be fair, there’s nothing that can be said to change the circumstances, and so I’ve decided there’s no right thing to say. We are all damned the second our mouths open. While we constantly worry about the “right” thing to say, we repeatedly rehearse the wrong thing. For this, I now have patience and empathy. Besides, how could we say the right thing when our only exposure surrounding childhood cancer comes in the form of a St. Jude’s commercial which we aren’t capable of watching without writhing in our seats or quickly changing the channel. 

Several months ago our son had an ear infection, and needed to be taken to the pediatrician. This is something utterly detrimental to my health, so I texted my husband who was at work. While he works, I am also working. Every second of the day, I am trying to take care of myself and my nervous system so I can be supportive of my family and present with my children. Taking care of myself does include doing laundry in a timely fashion, and mowing the lawn which creates a communal harmony. For our well-being, we need both the clothes we wear to not smell like mildew and for our neighbors to not think our house is condemned. Personally, I can’t do anything about the chipped paint. By completing these tasks, we meet the expectation of societal norms, or pressures, or whatever you want to call them. Part of my daily work is trying to care about things like laundry and lawns again.

“I can’t take him this time. It might push me over the edge.” The edge of what I am not sure, however I believe it to be a metaphorical cliff where my sanity drops off into an abyss. Also, there’s a lot of water, perhaps a Niagara Falls caliber of falling water. Will my sanity be recovered after such a disastrous fall? We don’t know. Husband doesn’t push it to find out. Instead he promptly responds like the great husband he is, “You can pick up my truck at the dealership, it’s getting repaired, and I’ll take him to the doctor.” Not fully understanding our deal, I agree. 

The air conditioned waiting room in May in Maine is a little overkill, and I’m wearing shorts for the first time this year because at any hint of summer after nine months of winter, that’s etiquette when you live in Maine. Even when your legs are the color of a fluorescent light bulb. 

I’m still practicing being in a public space since June died. A kind man with buttermilk skin, but deep lines showing his true age, checks me in from behind a counter in a room that smells like tires, dirt ,and cleaning products. I can faintly smell his cologne from across the desk. He’s being so kind I wonder if he knows June died. “That’s complete lunacy,” I’m thinking as he asks me to follow him to the waiting room before asking if I’d like a coffee. “No, thank you.” I shoot him a polite smile as I start to skim the waiting room warzone. He tells me as soon as the truck is ready he will let me know. I nod as I pinpoint my seat and start to make my way there. I now understand, this was the exchange. Husband will take our son to the doctor, but I am going to forfeit my entire first sunny afternoon in nine months in return. 

The room is encased by glass. Every which way you turn you can see the happenings of the dealership: people working, welding, scrubbing. I feel a little exposed, although I imagine everyone that works here does, too. There are four other people in the waiting room when I arrive. They’re positioned in chairs set in a rectangle surrounding a large flat screen television hanging on the wall. I brought my big quilted bag filled with snacks, drinks, and a book. I promptly use the bag to hide the whiteness of my legs. 

I’ve had practice in waiting rooms. I know you don’t show up empty handed because your mind will slowly burn holes in the backs of your eyes while you wait. I’ve almost gone blind from the fear, anxiety, and sheer aggravation of it all, and also from the waiting that has to be done in a waiting room. I imagine what my brain looks like while I sit in a waiting room: it’s definitely on fire, it’s swollen which has created a skull space entirely too small which is creating immense pressure, it’s deprived of sufficient oxygen (there’s only enough to maintain the fire), all while it’s violently shivering despite the burning hot flames. The body tries to exterminate the fire by dousing it in cortisol, lots and lots of extra and endless cortisol, but turns out cortisol is flammable! Ha! Who knew? Activities like knitting, coloring, and the million sticker-by-number puzzles are the key to avoiding torturous thoughts that ignite the brain. Snacks you can choke down like stale crackers, ginger ale, and peanut butter, are necessary to keep your blood sugar stable if you want to be able to stand when the nurse comes out to greet you and take you back to your daughter. Just get back to her, you think. Suddenly, this feels like a field sobriety test. For god sakes, just eat the stale saltine.

Twenty grueling minutes into my latest and newest waiting room experience, a St. Jude’s commercial comes on the television. You’ve got to be kidding me. Not here. Please, not here. God, why? My eyes flash to the four other people in the room. Two men immediately pull out their phones, and one shifts around uncomfortably in his chair. Another man stands up and walks out. I watch him as he paces back and forth on the other side of the glass. Can’t hide here. The woman in the corner puts in earphones and makes a phone call. People become scarce. Every single person looks away from the television. It suddenly dawns on me, this is why these commercials are five minutes long. Aside from it being a marketing scheme, it’s also a ploy to engage those who have disengaged. Once the initial discomfort of the commercial has worn off, and you’ve left the room, you circle back to continue your show, however, surprise! It’s still the St. Jude’s commercial. You say to heck with it, and settle back into your chair, with no other option but to wait because your show will be back on in a matter of seconds, you hope. Perhaps this time the commercial will get your awareness, your investment, your empathy.  I can feel myself sinking into and becoming the plastic leather chair which is now sticking to the backs of my thighs and pulling uncomfortably at my skin as I sink lower and lower to the ground. My reality has been exposed in this awful dealership waiting room. No one knew, but I know. I know that little bald head. I know that weary mom because I am her. I know those tubes, drains, and lines coming out of that baby. I know I’m alone, too, as I watch strangers scatter at the mere flicker of a St. Jude’s commercial. This is what life feels like after losing June. Everyone else can go about their lives once the commercial ends, except for me because this is my life.

Although, I’ll have to admit, like every good rumor or catch phrase, “God only gives us what we can handle” holds a kernel of truth. In part because women are inherently able to cope with more bullshit than anyone on this planet. And when it comes to our children, we are fiercely capable of overcoming every single one of life’s hurdles. Both a blessing, and a curse. Mom’s are able to absorb the shock, pain, sadness, and terror of their children and then put a home cooked meal on the table by five o’clock. And thank goodness we can handle what is dished out by God, but it's not because of “what” it is God is dishing. The “what” is irrelevant when you're a mom because you’re capable of handling anything and everything. Bring it.

Becoming Fearless

For several months after June died, I feared nothing. It was unusual. I stopped fearing that June was going to die. She was no longer suffering. It gave me great clarity. It gave me great relief. Tremendous peace. As if every cell in my body, coiled and anxious, had unfurled itself, relaxed, and let go. I spent the majority of days, nine-months pregnant, sprawled on the stained navy blue couch in our living room watching tv. I couldn’t do anything more, but at least I wasn’t scared. People walked around me. Brought me things like candles and smoothies, blankets and slippers. Encouraged me to eat by dropping off precooked meals. Encouraged me to shower when I’d been wearing the same clothes for almost a week. Summer came and went. Grief overshadowed the blissful lack of fear most of the time, but distinct memories of “how am I not worried?” or “why does this not scare me anymore?” consistently surfaced. Now, I had an almost ten pound baby in my belly. Both girls barely weighed in at seven pounds when they were born, but I didn’t care. Birth wasn’t remotely terrifying anymore. People would say to me “Wow, you know that baby has to come out of you.” I’d just shrug my shoulders and not engage. Baby could have weighed twenty pounds, I wouldn’t have cared. There literally was nothing more to fear. The worst had happened. Now, for the first time in my life, my mind and body were perfectly aligned and fearless. 

Suddenly, I stopped fearing the everyday minutia surrounding our older daughter like “Careful! You’re going to slam your fingers in the car door!” and “Stop jumping on the couch, you're gonna get hurt!” or “Don’t eat too much candy, you’re going to get a belly ache!” (which really meant there is red dye no. 5 in that which can give you cancer. She didn’t need to know the gritty explanation behind my neuroticism, she’s only four). I stopped worrying about people around me. I stopped worrying about conflict, and stopped caring to engage. 

I stopped fearing death. It was as if when June’s soul left her body she first stopped at mine and collected all the fear inside of me and took it with her, to heaven. Watching her last days on earth, the process of her dying, hearing her last breath, and watching the audible sound float to the cracked window across the room, wasn’t scary. It was peaceful. It was beautiful. It was graceful. It was relieving. It was heaven. June became our symbol of heaven. 

I once read, fear is the opposite of love. Fear is the ego trying to sabotage a soul’s true being which is happiness. June’s suffering had ended, but ours as her family, was about to become much more severe. Then it became obvious: June, was our teacher, and she was not finished with her lesson. She had so much more to teach. I was mourning the death of June, but I was also being led by her to a higher purpose. Part of that was letting go of my fear and opening my eyes.

Several months after June died, I was aimlessly scrolling the internet and randomly clicking on articles. I discovered one about Barbara Bush. In the article she said “I have no fear of death”. The First Lady’s daughter had passed away from leukemia just before she turned four. I had never known this. At that moment, I knew I wasn’t alone. Barbara Bush had spoken to my heart. All of those months of treatment June spent at the Barbara Bush Children’s Hospital, and I had never known that Barbara Bush was right there beside me. She had cried the same hopeless tears, watched her daughter wither away and die in front of her, and she had tried to nurse her back to health. Like me. Every attempt futile. Barbara Bush is an inspiration because she made it her life’s journey to help children and specifically children with cancer. She went on to live another incredible sixty-five years before finally knocking at the pearly gates, where I believe, her three-year-old daughter Robin, greeted her. 

Unwelcome Pity

My husband just arrived home after a four day fishing trip. Five minutes before he pulled into the driveway he sent me a forewarning text, “I’m so tired. I’m going to have to lay down,” to soften the blow of actually saying something this ridiculous to my face. I’ve been home alone with two children under five for the last five days and daycare has been closed all week, so naturally I responded “That’s a fucking joke, right? No way you’re going to lay down when you get home.” It’s sufficient to say, I’m also tired. He wished I would take pity on him. Instead, just before I did the dishes, put away the leftovers, picked up the toys I’ve been continually tripping on and packed my daughter’s lunch for school tomorrow, I forwarded him some of my writing and asked him to please skim it over before bed. With eyelids at half mast, he pleaded with me, “It’s just not my genre. I don’t want to read about how depressing your life is.” Correction, my life is not depressing. I hope when I write it’s everything but depressing. I want my writing to be uplifting, but honest. I want this to be proof that you can overcome life’s worst circumstances and thrive. You can find interest in things again. You can do all these things and not feel guilt while doing them, something I struggled with for a long time. Still do.

The pity in my husbands words seared my ear drums. It triggered me in places I haven’t hurt in a while. I’m reminded that pity is the cloud my and my family’s life is enshrouded in. Pity comes in the form of whispers minutes before I walk with my children up the driveway and into a house full of people who haven’t seen me since June died. It’s the gaze cast downward by the nurse who enters the room to administer chemo to June. Pity is a lack of eye contact altogether. Pity is discomfort. Pity might be someone projecting their discomfort on you.

Let’s save the pity for the people we went to high school or college with who married the wrong person and are miserable. Save it for the guy who cheats on his wife and she leaves him. Now he’s begging her to take him back. That’s pitiful. Save the pity for the people who make poor decisions and complain to you about them.

Pity is the opposite of love. Pity is words coming from a person’s mouth that have no meaning. Words that flippantly float off the tongue. Pity is shallow. Pity is superficial. Pity is attention seeking. Pity is perceived power. One person who pities another may feel above them or more fortunate than the person they are pitying. Pity is best expressed and most frequently expressed as gossip. As if that doesn’t say enough. I could say, “I pity my husband. That fool thinks he’s going to get a nap after he’s been away from me and the kids on vacation the last four days.” Cue a maniacal laugh.

I read an interview once with a person who was wheelchair bound. They shared that one of their greatest desires was to have other people make eye contact with them as they walked by. They further explained that people often look up, straight ahead, or purposefully away every time they walk by him. I imagined myself every time I’d walked by someone in a wheelchair. Then I imagined someone doing that to me: intentionally acting as if I don’t exist. I could hear an elder’s voice in my head “Don’t stare hunny. It’s rude to stare”. Who said I was staring? Had I been allowed to look at the person a bit longer maybe we would have exchanged a gaze or even better, a smile. Whoever taught me as a child that it wasn’t polite to stare at people had it all wrong. Don’t we stare for connection, for recognition? A child stares into the eyes of the unfamiliar out of wonderment. When we tell that child to stop, we tell her to stop being curious.

When my four year old gives a complete one-hundred-and-eighty degree stare at people in the grocery store, I say nothing and wait. I know what’s coming next. Either the person who is being stared at rolls their eyes at me, or makes an inaudible comment as they brush by, or both. What interesting is people don’t acknowledge her, my daughter doing the staring. Instead, they pin her stare on me, despite me not being her, and her not being even a mere extension of me. I’m not going to tell her staring is rude. When she walks by someone, including a person in a wheelchair, I want her to look that person respectfully in the eyes. If I were to tell her it’s impolite to stare, wouldn't I be implying that somehow one person is better than another or in the very least, we are different than them? Wouldn’t I be teaching my kid, albeit inadvertently, to pity people who aren’t the same as us? To feel sorrow for someone who may actually have a much happier existence than us? Pity is self-imposing one’s beliefs onto another because we are uncomfortable, while allowing a predetermined narrative to take flight. It’s possible the root of pity is plain unhappiness. When an adult acknowledges my daughter with their eyes, their voice, their energy, the four-year-old staring spell is broken. A brief connection is made. All is well. I’m going to save my pity for the next person my daughter lays her eyes on. I’m also saving some for myself for when she gets rebuked because we know how that’s going to go. That’s what pity is good for.

Practice putting away your pity when you meet someone who has lost a child to cancer or has a child in treatment. Pity scratches the surface of superficial wounds. It hurts on the receiving end. Pity is like throwing acid on a burn or skinning your knee just after it’s scabbed over. It’s not healing, it just making the cut a little deeper.

Pickles and Tickles

Healing comes in many different forms. It’s in the weekly therapy I attend. Therapy is a solid, “yes I am healing myself” activity of which I leave feeling both drained and replenished, every time. A year ago, therapy was survival. I’m relieved to say it has transformed since losing June in this last year, and it’s less and less survival and more and more cathartic. Consistently, therapy has proven to be the only sacred and safe space where I can drain the well of tears before I drown. Most times, I morph into a puddle as I lower myself onto the gray loveseat, allowing every ounce of me, the puddle, to trickle into the nooks and crannies of the couch in search of a piece of me that isn’t lost, lonely, or broken. “I want to be happy,” I tell my therapist. A familiar feeling phrase as it surfaces. Familiar because even before June became sick, I had spent thirty-five years of my life trying to escape brokenness and loneliness. Thirty-five years spent cultivating what I thought it meant to be happy. The moment the doctor at the stuffy pediatric urgent care said to me “this could be one of two things: a blood infection or childhood cancer” those thirty-five years of work went poof, and vanished.

Healing is rolling around on the floor tickling my two babies who are on top of one another in a giggling mound of sweet smelling skin and stinky bums. An activity I often forget to do and have to remind myself of daily. An activity I’m really too tired to take on, so I try to make it simple. I drop to my knees and tell the kids to come see me, that I have a secret to tell. They drop their toys or crayons and round their individual corners. I see the blues of their eyes flitter. A smile cracks at the corner of my sons mouth. The anticipatory tickling fest jitters are beginning and giggles can already be heard. My son crawls onto my knees and wraps his milky baby arms around my neck. A second later my daughter pushes him off my lap and onto the stained, dirty, hand-me-down living room rug on the floor, and swiftly secures a position for herself squarely on my lap. Just then I go in for the tickling kill, really trying to dig while not really digging my nails into their ribcages. Shrieks of joy spill from their mouths and in seconds we are all collapsed and staring at the broken light fixture on the ceiling. One second after that, little voices beg me for more.

I wonder if there is healing in wondering. Since there’s healing in therapy and tickling, I decide there has to be healing in wondering too. When I pull the car into a little burnt red convenient store parking lot and see the back of the head of a little girl sitting at a picnic table eating a sandwich. Her head is perfectly rounded and hair so blonde, it’s white. Like June’s was. She picks up a sandwich with two hands and pickles fall out onto her lap and onto the pavement below as she so carefully and methodically lifts it to her tiny mouth. She’s learning to eat a big girl sandwich. She furrows her brow in protest. Her mother and father are sitting on either side of her, shielding her from the harshness of the world, pouring only love into her as demonstrated by the mother who pulls the pickles out of her own sandwich and neatly tucks them into the girls. She’s a good mother, I can tell. I try to look away, but I’m parked too perfectly and directly in front of them. Both the mother and the father glance my way as parents often do when they’re analyzing the safety of a situation. I decide it’s best to avert my eyes and sift through the crap in my center console to find the cash for which I am going to use to buy a Kinderegg for my daughter who is at home and a sandwich and drink for myself. The entire reason I’m sitting in the parking lot. I acknowledge my wonder as I’m moving hair elastics, coins and endless lipsticks around in my console. I allow it to surface. I wonder if that’s what June would look like now. For a moment, I pretend I am seeing the back of June in real time again. It’s a trick my mind is good at playing because although reluctantly, it has had practice. I can’t help but flash one more glance at the girl as I think of my beautiful baby also dropping pickles on the ground. Would she cry? Would she tug at my shirt and furrow her brow? Would June even like pickles?

A Life Worth Letting Go

The definition of “adorn” is “to make more beautiful or attractive”. I purchased the domain “mssworntoadorn” nearly three years ago which is the first platform I used to blog. You’re probably thinking, “shouldn’t she know the meaning of adorn?”, although I’m relearning how magical words are. They have layers which unfold, and when the time is right, reveal their newest and best version to me. Perhaps perception is the most magical. Adorn means something different now than it did three years ago. The definition hasn’t changed, but the meaning is different.

I created this blog several years ago when I was pregnant with our second daughter, June. I spent 17 miserable weeks on bedrest while my toddler ran circles and did cartwheels around me. I desperately needed something for myself at the end of the day other than Netflix. Something I could get lost in while maintaining the dutiful horizontal position. I’d likely already spent hours reading and binging. Now I needed a purge. I needed a place I could dump my static energy. A place I could be my creative self. It turned to be more of an act however than an alignment with self when I began writing. I wrote from behind a curtain attempting to fill a void with what I imagined happiness might look like. Turned out, this wasn’t a purge at all. Instead, I filled my void with things. Clutter. Items that crowded my well-being. I searched for happiness in adornment such as clothing and accessories. The superficial. I fueled the addictive flame of vapidity and consequently despised the person I was at the end of the day. I tried, but I didn’t know how to change her. I didn’t know how to give her purpose.

When I started writing I chose a topic I knew many people were interested in: clothes. I liked them plenty enough that it could be fun, right? It turned out to be shallow and meaningless and instead of lifting me up, it weighed me down. The rat race of collecting more things slowly drained my creativity. Something inside of me ached for more. Or maybe the inner ache was my subconscious trying to forewarn me of what was to come.

I won’t delete old posts here because despite them not being me, they are a part of who I am. They denote a different time in my life: the “before” time. Before June got sick. Before our world was turned completely upside-down. The time I was blissfully and naively dripping with adornments and without a care in the world.

What I have learned is that to make life more beautiful one doesn’t have to adorn themselves. In fact, they should do the opposite. Remove the junk. Filter the nonsense. Clean out the closet. Declutter. Adornment may make one’s life more beautiful in the moment, however it’s all a facade. To make one’s life truly more beautiful you have to look within. Adornments are distractions. They’re fun. They’re flashy. They’re fake.

I have made a new oath out of the old words I used to create this blog. My oath is to continue to chisel the beauty away from the pain, so that the beauty, full of meaning and purpose, becomes my core, and the pain, piece by little dying piece can be left behind.

This is my retake. On life. On living. On loving. On surviving. One second at a time.

Taryn