"Will my young child keep their mask on?"
"Should we stay home from community events?”
"Where can I find reputable information on the rate of illness in my community?"
In the day and age of Covid-19, these are familiar questions for most families; however, for families of immunodeficient children, these questions were familiar long before "Covid-19” ever entered our vocabulary.
My son, Joshua, was diagnosed with a primary (congenital) immune system defect as a toddler. Specifically, he deals with a Primary Immune (PI) Deficiency that impacts his respiratory system and gastrointestinal tract. His PI diagnosis came after months and months of unending illness- infections overlapping other infections. Illnesses that lasted 24 hours for our daughter would last one week for Joshua. Infections that would require only fever-reducing medication for our daughter would require emergency room visits, chest x-rays, breathing treatments, and strong antibiotics for Joshua. It was a trying time for our family.
After receiving Joshua's diagnosis, we started asking those now familiar questions: Should he wear a mask? Should we keep him home? We devised a plan that worked for our family. Our strict precautions didn't keep Joshua healthy all of the time; however, they did help reduce the number of infections he dealt with. We found a rhythm that worked for our family. It wasn't perfect, but we did our best.
Then the world entered a global pandemic, and it felt as if the rug was being pulled out from underneath us completely. Everything shut down. Masks, quarantines, and social distancing were mandated, and our family was forced to begin our pandemic-induced homebound lifestyle.
For the last 15 months, our family has continued to live essentially homebound. My husband and I work exclusively from home, and our children are homeschooled. We have been limited to only virtual activities and events. We have been unable to visit in-person with most family and friends. We haven't been inside community buildings (church, grocery stores, or restaurants) this entire time. It is not an easy lifestyle, but we know that we are privileged to be able to take these precautions. We have a home we love, a large property that we can safely explore outside, and a small “pod” of family we feel safe visiting with in-person-- these have been our lifeline in the past year.
Yes, we were familiar with the questions, with finding data, and with taking precautions prior to the pandemic- but this has been a brand-new world for us to learn to navigate. It's a lonely and isolating one. We’ve struggled with feeling misunderstood and forgotten. We have faced scrutiny from those who don't understand how illness could devastate our family. In the time we've needed support the most, is has often been scarce and hard to find. Many families are living in “survival mode”, and we understand and respect that everyone has to weigh the personal risks and benefits for themselves.
Despite the loneliness and isolation that we’ve felt over the past year, we’re incredibly grateful for the love and support we have received. As vaccination rates go up and infection rates go down, we’re feeling hope and starting to see a light at the end of the tunnel. We’re happy to see the world slowly and safely open back up. It’s been a great feeling to confidently start loosening up some of our family’s safety measures. Yes, there are still difficult moments, but instead of focusing on those, we're choosing to stay positive and share our story in an effort to help others understand what it’s like to live with PI, especially during a pandemic.