Dehydrated, with no tears to cry, my 17-month-old son kept repeating one of the words he’d just learned: “Go.” As in, “let’s go home.”
“We get that a lot,” the nurses said. Tethered to an IV and vitals sensors, he was captive in a crib with metal bars. His forlorn expression made me feel helpless that I couldn’t spring him from this place.
Both of my children were born with genetic immune deficiencies, which means when they get sick, they can’t get well again without help. My son has Hypogammaglobulemia of Infancy, which impacts 3% of the population. My 4-year-old daughter has Common Variable Immune Deficiency (CVID), which impacts one in 100,000. Parenting two kids with weakened immune systems is a frustrating and exhausting challenge during the best of times. Before COVID-19, the disease caused by coronavirus, began sweeping the globe, every time I heard a cough across the aisle at the grocery store, I worried they’d catch something. The daily vigilance against germs gave me continual anxiety. Now, it seems like the whole world knows what it’s like to be constantly vigilant and constantly afraid.
Before the coronavirus pandemic took over our lives and sent us into total isolation at home, last fall, my daughter came home from the co-op preschool she attends in our Los Angeles community looking pale. She’s only able to attend preschool when no other children or teachers are sick and with the help of a weekly infusion of donor plasma. The infusion helps her fight off infection by providing the antibodies her body doesn’t make.
Her infusion was scheduled for 24 hours later, so I figured her antibodies were low and that’s why her energy seemed off. The next day, the seal-like barking of croup filled the house. Two weeks of missed school later, a chest X-ray revealed pneumonia. An exam at the pediatrician’s showed she also had a strep infection.
Then our son got sick. He started with the same croupy cough and progressed to vomiting and diarrhea. I bounced back and forth from our house to the pediatrician like a ping pong ball. Our daughter began improving with antibiotics, but our son didn’t, despite a steroid dose. Over the next two days his symptoms worsened, and we were admitted to Children’s Hospital.
Immune diseases are not something that’s tested for in utero, so when our children were diagnosed it felt as random as lightning. Many people with immune deficiencies are not diagnosed until later in life, because their symptoms and clinical histories are often dismissed or fall through the cracks in the health care system. There is a saying in the medical field: “If you hear hoof beats, think of a horse not a zebra.” The Immune Deficiency Foundation has embraced the zebra as its mascot because people with immune diseases are the rare cases.
With our daughter, I was told over and over by medical professionals that kids just get sick a lot. But our daughter was sick nine days out of 10, with frequent hospitalizations, and none of the kids she was around were sick. In my gut I knew something was wrong, so we sought a referral to a pediatric allergist and immunologist. After allergy testing revealed nothing, bloodwork showed our daughter’s immune system was basically nonexistent, and she’d need lifelong help to bolster it. There is no cure for CVID, and the worst-case scenario is eventual incurable lung disease caused by scarring from repeated respiratory infections. Armed with this knowledge, my husband and I set out to do whatever we could to keep our children well. Now, with coronavirus attacking even healthy people’s lungs, we are understandably terrified.
“We imagine what our kids’ conversations with potential partners down the road will be like. How do you tell someone you love that you have a genetic disease and there’s a chance your kids will get it? Much like today, how do people with COVID-19 tell their loved ones to stay away? These decisions are agonizing.”
However, in the last two years, my family has learned a lot, and much of it is helpful today as we battle this novel coronavirus. We limit our exposure to other people, especially anyone exhibiting even the most minimal cold symptoms. We wash hands religiously. We eat healthy, organic food and make sure to get enough sleep. We were also trained to give our daughter a subcutaneous infusion of donor plasma each week at home. Every Tuesday night we do “special medicine,” so she gets her “protectors.” At first it was hard for her to understand, but now that she gets to watch Netflix on the iPad, negotiate for M&Ms, and feels better the day after, infusions have become our new normal.
When our son was in the hospital, I spent three days and two long nights alternating between opening my spreadsheet to work with the doctors and holding his 25-pound body in a chair one foot away from the crib so the wires could reach. Stuck in the isolation wing, I thought of parents who don’t have access to quality healthcare, or who can’t afford to take time off work to care for their sick children. It’s heartbreaking. As hard as these experiences were, I’m so grateful I could be with my children when they needed me.
Last fall, when my son finally slept, I stared out the window at the city covered in Christmas lights. Cooped up in this tiny room where anyone who came in had to be gowned, gloved and masked made me lonely. It was devastating to think this is my kids’ never-ending reality, and now the reality for thousands of people of all ages around the world who are hospitalized with COVID-19. I am sure they are terrified, and without visitors they have to battle this illness alone. It’s tragic.
When we think about the rest of our lives with immunocompromised kids, my husband and I have a hard time. Our daughter needs weekly infusions for the rest of her life — not only during the coronavirus pandemic, but while she’s navigating middle school cliques, prepping for the SATs, and throughout college, if she’s well enough to attend. We are hopeful our son’s immune system will mature, but it’s too early to tell. We imagine what our kids’ conversations with potential partners down the road will be like. How do you tell someone you love that you have a genetic disease and there’s a chance your kids will get it? Much like today, how do people with COVID-19 tell their loved ones to stay away? These decisions are agonizing.
Our family and friends have reminded us in the past to be optimistic, that future medical advances may improve our kids’ quality of life. While this wishful thinking feels like putting a Band-Aid over a gaping wound, and a better treatment in 10 years doesn’t help me today, when I have to start the pre-meds for our daughter’s infusion; when I’m trying to decide who in our family will go to the store; when both of our kids get recurrent staph skin infections and now all the doctors’ offices are closed, it is a good reminder to focus on the positive.
We will find a vaccine for COVID-19, and I know from experience that isolating at home, while extreme, works. The more we stay away, the more lives we save. Remember, the life you save may be your own. Also, being optimistic is better for everyone’s well-being. I know my days are better when I focus on the good, not on the bad.
Although having to watch tears stream down our daughter’s still-chubby cheeks during her infusion, or hearing our son scream during one of his blood draws has been unbearable, and sometimes I think the unthinkable ― that we shouldn’t have had kids ― I remember all the joyful moments we have together and I know my kids are here for a reason.
Often the stresses we face in addition to normal parenting challenges feel overwhelming. Surrounded by piles of laundry, toys scattered all over the floor, dishes in the kitchen sink, I open the refrigerated box of infusion supplies and double check the list. Today, I’m grateful above all else that our daughter’s life-saving medicine is still shipping. As I sort syringes, numbing cream and IV tubing, I wonder what other parents are doing. Maybe they’re taking their kids to the park and keeping their distance from other people. Maybe they’re calling a friend. Maybe they’re trying to work from home and wishing they had more help. Parenting the medically fragile during these times is an amalgamation of all these thoughts, apprehensions and dreams of other realities.
In the early morning during our most recent hospital stay, our son woke up in a puddle of wet. His IV had stopped working and leaked all over the crib sheet. He was crying, so I pulled the lever on the metal crib bars and gathered him into my arms to wait for the IV team. He was very still while we waited, so much so that I thought I might even be able to fall back asleep. Then I realized I might not get many more of these moments, so I tried to memorize the feel of his soft baby hairs brushing his forehead, the sweet fresh scent of his barely year-old skin, the seriousness behind his large owlish eyes.
When our son got better, and we were discharged, I drove us home. I felt hollowed out inside. Turning into our driveway, I contemplated a stiff drink or a hot bath. Parking the car, I thought of all the things I still had to do; pick up stray socks, empty water bottles and throw away Goldfish wrappers, restock the diaper bag, put the stroller back, ensure their prescriptions would come through. Make dinner, give baths, check for rashes, give meds ... My dreams of cocktails and spa time faded, and the familiar sense of self-pity returned.
I started unbuckling seat belts and opened the garage door. I’m not sure where my parenting journey will take me next, or what challenges lie down the road, especially during this global health crisis. All I can say is that the bad days have taught me so much about what it means to love someone and that everything — the struggles, the worry, the anxiety — is worth it. As my kids raced toward the house, I realized they move so fast that if I blink, I’ll miss it all.
Mina Manchester is an assistant editor for Narrative Magazine and an MFA Candidate at Sewanee. Her writing has appeared in The Columbia Journal, The Normal School, Hither & Thither and elsewhere.
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