Lately my Facebook feed has been filled with people discussing the social distancing measures in place because of COVID19. I have seen several discussions about what people miss the most about life outside their homes or what they will do when they are finally able to come out of the government imposed quarantines and everything can “go back to normal.”

For those of us with medically complex children, this is our normal.

This is what life looks like when you are trying to keep your child alive.

For the past 3 years, since we brought Naomi home from the hospital, we have been living under a certain level of quarantine. We don’t do a lot outside of the comfort of our house and backyard. The girls don’t do playdates or outings and the only real friends they have are each other. We health screen everyone who comes to visit us and we rarely accept invitations even to family functions without making sure no one who is going to be there has been sick recently. I have even lost friends and connections due to the choices that we have to make and the way we have approached this crisis. Each September or October we start to tighten the quarantine. Exactly when it happens is based on what the data is saying on the CDC’s Weekly US Influenza Surveillance Report which I have bookmarked in my internet browser and monitor weekly starting the first week of September. Once the flu hits the “Local Activity” level in the state of Nebraska, we start limiting our activity to essential things only.

My husband and I go to separate church services so the other can stay with the girls.
We stop going to parks and playgrounds.
We stop going on family outings to the zoo.

My kids have never seen the inside of a grocery store or a Target for more than a minute on a very rare occasion because there was no other choice. During the spring and summer I usually do the grocery shopping once every two weeks, by myself, armed with a travel sized can of lysol and a container of hand sanitizer. I go to the same couple of stores with an itemized list so that I can go in and out as quickly as possible. During the fall and winter I use pick up and delivery services so that I don’t have to go into the store.

On a good day my hands feel like sandpaper. Most often they are so dry and cracked from constant washing that they are bleeding. It feels like I have a thousand little paper cuts on my hands whenever I have to use hand sanitizer because there isn’t a sink around.

Living this way, especially now when everyone is anxious to get “back to normal” is one of the more difficult things we have had to do. But it’s all worth it knowing that our daughter is safe and that she is being given her best chance at surviving and overcoming the odds that seem to consistently stacked against her and us.

COVID19 may not have changed anything in our day to day but it did rob us of progress. Many of you know that we were scheduled to undergo surgery to place tissue expanders in Naomi’s abdominal cavity to create space for her organs to fit. It was to be the first of at least 4 surgeries to occur over the next several years. That first surgery has now been postponed until the immediate danger of the COVID19 virus is over. But long after everyone else goes “back to normal” we will continue to keep social distance, wash our hands constantly, shop only when necessary and avoid sick people.

Over the past few years I have often prayed as Jesus did in the Garden, “Father, if you are willing, remove this cup from me. Nevertheless, not my will but yours be done.” I don’t understand or like what is happening right now but I fully trust in the God who does because he is walking right beside us as we navigate the lives we are blessed to live, wether they are troubled or carefree and he also knows the big picture, he’s seen the end of the story. “It is he who made the earth by his power, who established the world by his wisdom, and by his understanding stretched out the heavens. (Jer 10:12-13)”