Back-to-School Means Back To Constant Anxiety

When your child is medically complex, back-to-school worries are also complex. As the CDC continues to loosen COVID-19 restrictions, one mother's worries grow stronger as school starts.

Child with masking going to school
Photo: Mia Carella

Since my oldest child started kindergarten, back-to-school has always been a time of heightened anxiety for me. As the parent of a child with disabilities and medical issues, I have always wrestled with an overwhelming collection of fears when it comes time for my daughter to leave the sheltered safety of our home and return to school.

Like most parents, I have the familiar worries about which teacher my daughter will be assigned and whether or not she will have friends in her class. I worry about figuring out her new bus schedule and making sure we don't miss it on the first day. I worry about whether or not she will have someone to sit with at lunch and play with at recess.

Then there are the worries that are added on as the parent of a child with disabilities and learning issues. Did I advocate hard enough for the best possible placement and IEP accommodations? Will my child be underestimated because of her speech and language delays and other issues that make her different from her typical peers? Will her classmates accept her despite these differences?

It's a lot. And that's just the beginning for me.

In addition to these heart-wrenching anxieties, back-to-school brings up an entirely new level of fears for me because my child is medically complex.

Baby in NICU
Mia Carella

Evalyn has a serious congenital heart defect, a problem with the structure of the heart which is present at birth. She was born in respiratory distress which led to her being immediately whisked away, intubated, and taken to the NICU. Within hours she was transferred to a Cardiac Intensive Care Unit at a children's hospital an hour from my home. She was on a ventilator in the CICU for three days and then hospitalized for nine more weeks. She had her first (but not her last) open heart surgery at only 7 weeks old. These first 66 days of being a mother were harrowing to say the least.

As time went on, my husband and I learned more about Evalyn's medical problems and developmental delays caused by them. We filled our contact list with the phone numbers of various medical providers and filled our days with specialist and therapy appointments. When I returned to work full-time when Evalyn was a year old, she entered daycare. It was the first time she was in someone's care outside of our home.

Within ten days of starting daycare, Evalyn developed her first cold. It was an undesirable, but necessary milestone to hit. I even documented the occasion by taking pictures of her with a tissue box. Baby's First Cold.

After that, the illnesses were frequent. Every lurking germ seemed to find our vulnerable little girl. There were ear infections and runny noses and lingering coughs. But when Evalyn was about 18 months old, things escalated quickly.

A cough that started as a part of a common cold grew in intensity. Instead of getting better with time, it got worse. There were multiple pediatrician visits, late night phone calls, and nebulizer treatments. Then one Saturday morning as we sat in the doctor's office for yet another appointment, we were told we needed to go to the emergency room. Evalyn's oxygen levels were measuring too low and she had a high fever. So that's where we went.

At the emergency room, concerned physicians arranged for my daughter to be transported by helicopter to the same children's hospital where she spent the start of her life.

I was in shock. This had just been a cold a few days ago. How was this happening?

My husband and I were not allowed to ride with Evalyn due to weight limits, so we raced the helicopter to the hospital. We would spend the next three nights there as she was treated for a lung infection before she was released in stable and improving condition.

In the years since this traumatic incident, we have had to relive our fears many times. There have been countless pediatrician visits and multiple chest x-rays. There have been a few more emergency room visits resulting from illness, including one ambulance ride. We have purchased a pulse oximeter to have at home to measure oxygen levels. The nebulizer with its two medications is our best friend at the first signs of a cough.

All of this to say that my next level of back-to-school fears revolve around my daughter's health.

We have seen firsthand how a cold can turn into a life-threatening situation for Evalyn. I know that a "common cold" is much more complicated than that. I know that the flu or strep throat can lead to serious complications because of my child's underlying medical conditions. Every school year I am wracked with anxiety that my daughter will get sick. Really sick. Back in 2019 I even put out an online plea begging other parents to keep their sick children home from school.

Obviously this started before the pandemic and way before anyone had ever heard of COVID-19.

This year with back-to-school approaching during yet another spike in COVID-19 cases, I am doing my best to remain calm. Just yesterday on August 11, 2022, the Centers for Disease Control and Prevention once again updated their COVID-19 guidelines. This time they have relaxed the guidelines to include eliminating the recommendations for individuals to quarantine after being exposed to COVID-19 regardless of vaccination status, as well as no longer emphasizing the need for social distancing.

While these changes were made in light of the information that "high levels of immunity and availability of effective COVID-19 prevention and management tools have reduced the risk for medically significant illness and death," as a parent of a child at high risk for complications from COVID-19 I am still very concerned.

I need to focus on what I can control. Our whole family has received the COVID-19 vaccinations and booster shots. We continue to mask in indoor public places, and my daughter will mask on the bus and at school despite all mask mandates being lifted in our area long ago. We are extra careful with hand-washing, and I am obsessed with carrying hand sanitizer everywhere we go. We cannot be too safe when it comes to Evalyn's health.

Child in ER with oxygen mask
Mia Carella

Some will mock me for my worries and minimize my concerns. But until you have walked in my shoes you can't truly understand. Until you know what it feels like to cringe at the sound of your child's cough or a raspy breath, you can't truly understand.

Until you have stayed awake late nights watching their chest rise and fall checking for labored breathing, you can't truly understand.

Until you have gotten up in the middle of the night to do laundry just in case you need to pack for a hospital stay, you can't truly understand.

I would love to let go of my anxieties about back-to-school, but I can't. Because I know what even a common cold can do to my child. And because of this, I'm terrified of what COVID-19 could do.

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