Carrying Mothers and Rainbows
I jolt out of my sleep every time I hear my son, Cameron, coughing from his room in the middle of the night. Cameron, only twelve years old, sounds like an old man who has smoked a lifetime of cigars. When I hear the constant coughing, I detect that something is wrong. The hacking is dry and short, followed by long wheezes that whistle, sounding mental alarms and waking me from half sleep into panic mode as it dawns on me — my son is having an asthma attack.
The long night battling asthma attacks begins, and I can only anticipate how the night will end. I sprint into my son’s room to give medicine called albuterol. I wrap my arms around Cameron and hold him while trying to gauge whether the asthma attack is bad enough to warrant a trip to the hospital. My motherly quest to nurse my son back to health at home, bargains, fights, and prayers that the asthma attack will get better with just one more treatment. But when my son gasps for air and the coughing gets shorter and louder, he puts both hands on the top of his head as a sign for us to surrender and go to the emergency room. We always leave the house feeling defeated because we know that a single trip to the emergency room may turn into a week’s stay at the hospital. We never want to leave home. Frightened, I carry my son through the hospital doors and hope that he doesn’t have to stay.
Cameron was treated regularly for asthma at the children’s hospital where I worked for nine years. I was a specialist who helped children cope with hospitalization. I loved my job. It was rewarding, and, in many ways, my job empowered me with coping skills to deal with my son’s chronic illness. Though exhausting, I became used to alternating between “patient mom” and “employee” each time my son’s worsening asthma required a hospital admission, which was usually in September when the California wildfire and fall season merged.
When Cameron’s severe asthma attack in September 2016 landed him in the pediatric intensive care unit (PICU), I felt helpless and incapable of getting us through another hospital stay. And when I ran into my old friend, Michelle, whose daughter, Aniyah, was admitted to our same unit because of a severe asthma attack, it felt like my personal and professional worlds shifted off their axis, sending my coping skills and emotions spinning.
When Cameron’s severe asthma attack in September 2016 landed him in the pediatric intensive care unit (PICU), I felt helpless and incapable of getting us through another hospital stay.
I first met Michelle and Aniyah in 2006 at the fitness gym where Michelle and I took the same kickboxing class. We relied on the gym’s minidaycare to watch our kids. Aniyah was four years old at the time, and Cameron was two. I saw Michelle standing in line with her daughter a few times before we made a connection over our kids having asthma. Michelle’s rich, satiny espresso-brown complexion juxtaposed with the marshmallow-toned child clinging to her leg. Each time I saw Michelle, Aniyah was underneath her mother, either holding onto her arm or leg. The mother–daughter duo looked impossible to separate, and when they both smiled, their cheekbones formed in the shape of clouds holding together a rainbow.
Michelle and I always stood in the daycare line next to each other, waiting to check in our kids. It took us longer to check our babies into the “kid’s club” because both children were the smallest with a medical condition. Michelle and I were the only moms left handing over inhalers and instructions.
“Asthma?” Michelle questioned when she saw me pulling out the clunky red inhaler from my purse.
“Yup!” I nodded while handing the inhaler to the daycare attendant.
“My daughter, too! See you in class?”
And for several years, I mostly saw Michelle at the kickboxing class. I learned that like my son, Aniyah was the youngest of her siblings. And, like most babies of the family, Aniyah and Cameron both had this charming and lovable sweet disposition that let everyone know they held a special place in their tribe. At the gym, when Michelle and I were called over the intercom to the daycare center, we smiled at each other and nodded in acknowledgment that one of us was being called to give an albuterol treatment. What became known didn’t have to be explained. We belonged to the mother tribe of asthma warriors.
In San Bernardino, California, where Michelle and I raise our kids, the fight to breathe clean air is a growing environmental issue and a battle for thousands of asthma warriors. In our community, emergency room visits have doubled among children with asthma in the last two years. I learned from an article that San Bernardino County’s childhood asthma rate is 15 percent while the national rate is 9 percent.
In San Bernardino, California, where Michelle and I raise our kids, the fight to breathe clean air is a growing environmental issue and a battle for thousands of asthma warriors.
The expansion of industrial warehouses, diesel trucks, and increased traffic further worsened a city with bad air quality from railroad tracks that run through the city. Since the high incidence of emergency room visits was so bad in our community, our local hospital conducted a study to investigate what contributed to the increase. Findings showed that children living near railyards have higher incidences of asthma. It was not a coincidence that Aniyah and Cameron suffered from severe asthma and attended school within ten miles of a railyard.
While our city is enclosed in a polluted environment, it is surrounded by beautiful mountains. On any given day, you can see a blanket of smog covering the city from any elevation point. Most families exercise at the top of the mountains for fresh air.
Just a month before our kids were hospitalized, I ran into Michelle. As I was walking up a steep hiking trail in the local mountains, Michelle was walking down. We went past each other but quickly turned around after recognizing one another. It had been years since I last saw her.
“Heeeyyy, girl!” We both held out arms but were too far away and short of breath to come in for the hug.
“It’s good to see you!”
“You too, girl!”
Summer wildfire season quickly transitioned into fall allergy season by the time Michelle and I would cross paths again. Now that the kids were older, it was unusual for us to run into each other so often. We would meet again, but instead of the joyful run-ins at the fitness gym or hiking trail, we met outside of the double doors of the PICU. We started to walk past each other like we did on the hiking trail before bumping into one another.
“Hey, girl?” We both noticed the green visitor bracelets on our wrists. We didn’t even have to ask. We just knew. We stopped for a moment to recount the details of the night our kids arrived at the hospital. We talked about asthma attacks after school, calls for an ambulance, and sleepless nights.
Before we parted ways, with a frantic look on her face, Michelle nervously gasped, “My baby is on the ventilator. The doctors are saying she won’t… How is your son? Will he pull through?”
I felt my heart travel up to my throat. I swallowed to try and chase it back down. I couldn’t speak. I didn’t know how to answer. I mumbled, “He is… um… getting better.”
Instantly, I felt guilty. Guilty that my Cameron was improving, and Aniyah was not. Guilty for expressing the joy I felt because my son was improving.
I stared at Michelle, stunned by what she was telling me, confused about the roles we’ve played in each other’s lives. Both of us, quiet, unable to speak. I stood there feeling swallowed by motherhood, asthma, heartache, and guilt.
At that moment, I lost balance on how to handle my son’s hospitalization. And, I couldn’t cope knowing my friend’s daughter, who was only a few years older than my son, could die from the condition they both shared. My turntable suddenly felt like a sliding door.
A minute standing in front of Michelle felt like an hour. I was deep in thought about everything from Aniyah to my son, asthma, and work. I could hear my boss saying about boundaries, “maintain professionalism, no sharing personal stories or hugging your patients.” But for Michelle, I wanted to break the rules and give her a hug, yet I could not bring my body forward for an embrace.
If it were a typical workday, I would allow Michelle to vent uninterrupted, offer resources to grief support groups, or give books on how to deal with a loss. But here I was at work, not working. I wasn’t really an employee today. I was a patient’s mom. I was a friend. I didn’t know how to be any of those things without feeling like I was blurring some imaginary line. I felt powerless to render anything meaningful except to say, “I am sorry.”
I don’t remember how Michelle and I ended our conversation. I don’t even know how I got myself down five stories to the parking garage to sit in my car. I rested my head on the steering wheel and cried uncontrollably for two hours during the nurse’s change of shift when visitors weren’t allowed onto the unit. I was heartbroken over Aniyah’s poor prognosis. I felt miserable that I did not have the words to comfort Michelle. For the first time, I could no longer deny that my son’s asthma was the worst it has ever been, and it was possible that I could lose him to asthma, too. While I was discovering the fear I carried around of losing my son, Michelle was living every parent’s nightmare.
For the first time, I could no longer deny that my son’s asthma was the worst it has ever been, and it was possible that I could lose him to asthma, too.
When I returned to the unit, the nurses told me that my son was being moved off the PICU floor to a lower level of care. Blended tears of joy and sadness ran down my face. Immediately, I asked the nurses to transfer my son in the middle of the night. I didn’t want to run into Michelle while my son was leaving the unit. I was scared. I still didn’t know what to say. To admit that my son was improving felt like a show — a parade. I didn’t want to flaunt that my child was leaving the unit, even though I was relieved.
I walked behind my son’s hospital gurney as the nurse pulled the bed forward by the rail, leading us down the long and dimly lit PICU hallway. At midnight the unit was eerily quiet except for the distant and fading sounds of beeping machines. I kept my eyes glued to my son. I could only see the top half of his body as he slept. The basketballs on my son’s patterned pajamas bounced up and down in sync with each breath he took. Cameron’s breathing had finally improved, and I could tell. His hands were no longer at the top of his head, but resting comfortably at his sides. Each time the nurse stopped pulling the bed to fix little blips along the way, I lightly kissed my son’s caramel pecan cheeks barely missing the corner of his eyes and tips of his long lashes.
He will be happy to wake up and breathe a little better. If I know Cameron, all he’ll talk about is getting back on the basketball court to play. I couldn’t wait for him to get back on the court either.
I paced myself slowly the rest of our walk, trying to step as quietly as I could while shuffling the loose straps of my heavy backpack onto my shoulders. I did not want to wake my sleeping son or the patients and their families during our move.
As we paraded through the unit, I could see into some of the patient rooms. Only a few parents slept. Most were doing their own quiet shuffling while attempting to get comfortable on the hard blue vinyl visitor chairs. Some of the parents looked up, waved, and smiled at me as we marched past their rooms. I smiled and nodded my head back at each parent who was happy to see us pass through the unit. I held my son’s personal belongings close to my chest and waved at every parent. I was happy, and it was the first time all day that I felt it was okay to be happy that my son’s health had improved.
I did not know the names of the acknowledging parents. But we were familiar faces who waited in bathroom or cafeteria lines together. We spoke a language of head nods and half waves on the days when exhaustion from sleepless nights with sick kids made it difficult to open our mouths to speak. With wrists that donned green visitor bracelets, we waved at each other as a sign of solidarity of the struggle of having a child in the hospital. We cheered each other on and blindly supported each other. And this time we waved to mark a celebration for our community. Because we all know that on the first day of a hospital admission, we count down the days to make our grand exit. Leaving the unit was a victory. And this was our victory lap. We made it to the end of our route.
With wrists that donned green visitor bracelets, we waved at each other as a sign of solidarity of the struggle of having a child in the hospital.
My body relaxed as my son’s float inched closer to exiting the unit’s double doors. We were almost off the unit when I realized that we would pass Michelle’s daughter’s room. I froze. My legs began to tremble, and each step toward the door was more challenging than the last. Bright yellow lights shone from outside the room, adding sunshine to the dark, blank sterile wall illuminating from Aniyah’s glow and giving a spotlight to our exit.
When we passed the room, I could see Michelle’s bleak face as she hovered over her daughter’s bed. Michelle’s cheeks hanging too low to hold a rainbow leaned over to kiss Aniyah. I looked away not wanting her to notice my stare. I started to cry. I wanted so badly to run into the room and give my friend a hug. I wanted to offer her support, let her know that we were mothers in the village, and I, too, would cry out to the Lord and pray with her, pleading for healing and a miracle of just one more treatment. But my feet felt stuck to the ground. My body felt like it was dropping as the floor moved beneath me like I was traveling on a conveyor belt — my mind and body paralyzed.
Michelle must have heard our procession. She looked toward the door. We made eye contact. Michelle looked away. Neither of us nodded or waved. My throat felt warm and dry. My stomach churned mixed emotions of guilt, relief, and sadness again. I wished that Michelle and Aniyah’s journey would lead them from these hospital hallways to their home — together. I wanted nothing more than for Michelle to feel the parts of me that were filled with joy that my son was breathing better. I wished that I could take away the pain that she felt. I hoped that we would remain friends. When the double doors opened and my son’s gurney glided off the unit, I thought I would feel at ease. I did not. I burst into tears and began crying uncontrollably while in deep thought about Michelle and her walk off the unit, behind her daughter’s gurney, into a funeral home, behind her daughter’s casket.
Being a mom of an asthmatic child is the scariest and loneliest feeling. We carry our babies into the hospital watching them struggle to breathe, while trying to hold onto the promise of rainbows. I know every mother with a child in the hospital will not take their baby home. But I wish we could carry out in our arms every mother who has to leave alone.
Birthworker, community health worker, and health advocate, Regan Kelso-Spells is a newly published writer contributing to the Kevin Powell’s Writing Workshop anthology: 2020: The Year that Changed America. She loves meeting new people, attending concerts, and going to the beach. Kelso-Spells lives in San Bernardino, California, with her husband and three young adult children.