Fragile Living

Written by: Benjamin and Bethany

Thinking back on our 2020 year so far, the word “fragile” comes to mind. If you would have come to me a few months ago and asked me how life was going I might have broken down in tears. I also might have smiled and said, “things are great!” Living with a member of your family that has a compromised immune system has its ups and downs, which causes your emotions to ride those waves.

When we found out 3 months ago that the newest member of our family had a brain tumor, we were a wreck. We were shocked that our perfect little bundle had so much going on inside such a little body at just 3 months of age. Little did we know the ride of life that we were about to embark on and how much things were going to change. We knew that doctor’s visits, possible hospital stays, and a change in work schedule for one or both of us, were probably in the books. What we didn’t expect were the changes we were going to go through at home after the initial hospital stay was over and our new “routine” was put in place.

The biggest change was that we were advised to not take little one out in public. This meant, no daycare, no errand runs, no church on Sunday mornings together, and no eating out at restaurants as a family. Someone would have to stay at home with the baby at all times. It also meant that we had to make sure we washed our hands more than usual, wore gloves when we changed diapers for 48 hours after chemo, changed and washed her bedding more frequently. We were also advised to try to have baby keep their hands out of their mouth (which is impossible) and we, as parents, should be trying to not be around anyone who is sick if we do go out or are at work, so we don’t carry those germs home with us. My husband works in healthcare, and I am a teacher. Being around people who carry germs was a given every single day of our working lives. But we knew that we would try our best to keep our little one safe.

After taking FMLA for two days a week, my husband taking one day off a week, and my mom being available to help the other two days, we had a set plan so that baby would not have to leave the house except for appointments. It was so hard adjusting at first to the new routine. Not leaving the house together as a family and also not bringing many different people in to watch little one was a big change. On the days that I worked, I would come home, change my clothes, and wash my arms and hands as best as I could, I did not want to risk exposure. Not leaving together, going minimal and only necessary places, and usually only going to work had become our new normal. At first, it didn’t seem that difficult, but as the weeks wear on, you realize that staying home and away from a lot of people is going to be difficult physically and emotionally. As a few months rolled by, the reality that this could be us for the next 2 years sunk in. 

When I first heard about the outbreak of COVID-19, I honestly didn’t think too much about it except that we were going to have to be EXTRA careful if possible. But when the community, events, and schools started shutting down, I knew this was more serious. For a lot of people, this has been a big change to their daily lives. For us, there have been changes, but for the most part, this is how we live every single day. The one difference is that I literally do not leave the house except to get groceries or take little one to the weekly chemotherapy appointment. For a lot of people, they are taking extra precautions not to get sick now – double washing hands, hand sanitizing, maybe cleaning a little bit more than usual. But this is us, every day. 

I am so grateful that we have the family support that we do, and the support from organizations like Angels Among Us to bring us some relief during this time. I cannot imagine not having the family support system in place like we are blessed to have. The feeling of being “trapped” in because of a germy society can really take a toll. We will continue to live like this as long as it takes. There will be challenging, simple, sad, and joyous moments along the way – as there already have been. I cannot wait until the day when we come out on the other side of this and are able to look back and think, “we’re free!” Free from the social distancing, free from appointments, and long lists of medications. Free to go out and about. But it probably won’t end for us when COVID-19 has dissipated. For us, isolation and social distancing probably won’t go away for a very long time.