How the World Became More Inclusive for My Daughter During the COVID-19 Pandemic

There is no doubt we are living in unprecedented times. Our normal, daily lives have drastically changed. For most of us, the current situation has presented vast new challenges and struggles. It may feel lonely, strange, overwhelming and even scary. But for my daughter who has a complex medical history, when governments took measures to stop the spread of COVID-19, an unexpected thing happened. As the world closed down, a new world opened up around us.

You see, my daughter has a rare post-transplant autoimmune disorder. It has taken a toll on her body. Despite numerous treatments and therapies to improve her health, a mild infection could prove catastrophic for her. Last fall, months prior to the threat of COVID-19, our daughter’s doctors advised us to keep her mostly quarantined for her safety. Of course, we still needed to take her to necessary doctors’ appointments and therapies. But getting her to those appointments was carefully planned and executed to minimize the risk of exposure to germs. Public spaces like school, church, grocery stores or even the park could be dangerous for her immunosuppressed body.

Since last October, she’s stayed at home. It wasn’t what we wanted, but it was OK — a small sacrifice to keep her safe. And while we kept busy and content by doing puzzles and playing in our yard, she longed to see her friends and classmates. When I dropped her older brother off at school, she asked when she would get to go back.

And then, after almost five months of my daughter’s quarantine, the threat of COVID-19 came close to home and government leaders took measures to slow the spread of the virus. They called for social distancing, increased handwashing, and the closure of non-essential businesses. When the world locked down, something fascinating happened — creativity blossomed, determination shone and our community grew. And it changed our already-quarantined daughter’s world.

When physical schools shut down, virtual classrooms opened, creating a learning environment that was now safe for my daughter to participate in. She saw her friends and interacted with beloved teachers. She giggled and eagerly shared with her peers.

When churches suspended services, home church began. For the first time in months my family had church together! No longer did our family split up on Sundays — half of us going to church, half staying at home to keep our daughter safe.

When hospital clinics stopped most physical appointments, virtual visits began. We had a new way for my daughter to get some of the care she needed without the risk of exposure! It took far less preparation and fear to get essential medical expertise.

When therapy clinics closed their doors, teletherapy opened. Now we have an innovative way for my daughter to receive therapy services in the safety of our home.

When I open the laptop screen, she rushes over, asking which of her friends she gets to see today.

I know for many these unparalleled times are isolating and overwhelming. But the unique challenges of these circumstances have opened up a safe, inclusive world for my daughter. She is now included in situations that normally excluded her.

All of this took a great deal of work, much coordination, and a bit (or maybe a lot) of creativity. It’s taken concentrated commitment to reassess, shift and adapt so quickly during these unforeseen circumstances. And as a momma, I am infinitely grateful for those who have made this world safer and more inclusive for my daughter. A world that, for my daughter, had been closed down months before the threat of COVID-19 due to her medical concerns, and now emerged during a global pandemic.

Now I’m not suggesting things should stay this way. I know this would be devastating for most and unrealistic overall. However, as things begin to open back up, I hope we can all remember how our community dug deep and built something special even when things were hard, confusing and scary. I hope that as we move forward, we can continue to think outside the box and remember some of the inclusive practices that were born out of necessity during this extreme time. Haven’t we all found some new processes during the last several weeks that are more efficient and convenient? Let’s hang on to those and the more inclusive ones as well — for the benefit of all of us.

For more on parenting during quarantine, check out the following stories from our community:

• Please Wash Your Hands Year-Round — Not ‘Just’ Because of the Coronavirus
• How We Can Promote Continuity in Special Education Programs During the COVID-19 Pandemic
• 25 Hilarious (and Sweet) Photos That Show What Parenting During COVID-19 Is Really Like
• What It’s Like Parenting a Medically Complex Child During the Coronavirus Outbreak