The world is in the middle of a crisis. As I’m writing this we are in the middle of the coronavirus pandemic that is sweeping not just our nation, but our world. People are being asked to stay at home to slow the spread of this highly contagious, sometimes deadly virus. Schools are closed. Restaurants and small businesses are offering take out and curb side service only. People who can are working from home. People are panic buying all the nonperishable foods and toilet paper in every grocery store across the city. Hand sanitizer, disinfecting spray, Clorox wipes, excessive hand washing and staying at least six feet away from other people at all times are massively popular right now. I went to the grocery store over the weekend and there are sanitizing wipes at the entry and employees walking around with the sole job of wiping down handles and shopping carts. People are walking around wearing hospital masks and gloves pushing overflowed grocery carts and skirting to the edge of the isles to keep their distance from other shoppers. It’s an uncertain time, everything is different and sometimes even a little scary. We know that coronavirus can be deadly for older people and those with certain underlying health conditions but it can even have a severe effect on young, healthy people. It’s new, we don’t know a lot about it and we are desperate to protect ourselves and our families from coming in contact with it. An invisible enemy. Many of us have never experienced anything like this before - the social isolation, the extreme precautions, the anxiety. We have. Two years ago we experience it all. Let me tell you about it.
When Caroline and Will were in the PICU we lived in the same type of reality that the world is living in today. The rest of the world didn’t join us and the media wasn’t constantly adding to our anxiety, but there’s an eerie similarity to how we are living now and how we lived then. Our babies contracted a virus at birth, enterovirus. It was likened to the common cold, something that may have a mild or no affect on a healthy child or adult who contracts it. In fact, we were told that we have probably all had it at least once in our lifetimes. However since their immune systems were new and weak the virus attacked every organ in their bodies, causing multi system organ failure, meaning one organ after the other stopped working or almost stopped working. They were in the PICU with multiple interventions - medications, ventilators, EMCO (a lung and heart bypass machine) and dialysis. If they had contracted another virus or illness during their recovery they would have had very little chance of getting better. We were hyper aware of what could happen if they came in contact with another virus or bacterial infection, we knew they would probably die. So we did all the things the world is doing right now. We washed our hands until they were raw, hundreds of times a day in hot water. We showered and changed clothes before going to the hospital and right when we came home. No shoes in the house. Limited trips to the store. Lots of grocery deliveries that were immediately sanitized before going in the pantry. We rarely saw anyone, not because we didn’t want to but because we weren’t willing to expose ourselves to potential germs that could be passed to our babies. If we did see neighbors or friends we kept our distance and stayed outside. People would ask to come give us a hug or go on a walk and we mostly had to decline because we knew what might happen if someone unknowingly passed a virus to us. We knew that sometimes people can be carrying a virus with little or no symptoms. Nothing really felt safe. We didn’t have a term for it but we were social distancing in an attempt to protect ourselves and our vulnerable babies. When we finally got to hold the babies we put on disposable hospital gowns and sometimes we even wore masks and gloves. They were “on contact” for the first few weeks in the PICU, meaning before anyone went into their room they had to wash their hands and put on a clean gown, masks and gloves. The day would end with a giant trash can full of pale yellow paper gowns and purplish blue gloves overflowing from doctors, nurses, respiratory therapists and us going in and out.
When Caroline came home on January 1, 2018 nothing changed, in fact I probably got even more diligent with cleaning and keeping her safe. I sanitized our entire house, washed every sheet, towel and anything else that could possibly be washed in hot water before she came home. She barely went anywhere for months and if she did she was in an ergo attached to me. I didn’t let people hold her, touch her or breath too close to her. I am not typically a very confrontational person but there were plenty of times that I had to say no when people wanted to hold her or got too close to her. And when people put her health in danger by not following these requests, I let them know how their irresponsibility could cost us her life. We kept this up for about a year and honestly it has never truly worn off. I have always been germ-conscious, especially when it came to babies. With our first two children I made the very limited visitors we allowed to come in those first few months wear hospital gowns if they wanted to hold our baby. Everyone was asked to wash their hands and wear hospital masks if they were unvaccinated. When someone sick came to visit our first son when he was only a few months old I was distraught. I didn’t understand how anyone could be so irresponsible and made it a habit to routinely ask if a person was sick before they came over. It probably seemed overkill to many, but we were the ones with someone to loose.
That’s how I feel about the coronavirus, maybe we are overreacting, maybe it’s too much to close everything and socially isolate. I am not a fearful person and I don’t think we should be responding in panic, but if you are someone or love someone who is at risk, I can guarantee that nothing seems too outlandish if it will keep those you love safe. I have a high risk child, not Caroline, but her sister has asthma and so do I. I promise it’s worth protecting her, even if it’s incredibly inconvenient. The world desperately needs her here and if you know her you know there is no truer statement. She is a magical child with endless enthusiasm and energy. We can’t loose another one. The children we support through The Will King Foundation who have CHD, they are all at high risk and so are many others. If you fall into this category or if your child or someone you love does, I understand. I know the fear and the anxiety of passing a virus on to someone with a weakened immune system. In fact, I am pretty confident that someone in my family gave enterovirus to our twins. I don’t know who because none of us felt sick but it’s a virus, like the coronavirus, that someone can carry with no symptoms. It only makes sense that someone who was in close contact with them is the person who gave it to them, it likely could have been me. I promise it’s a hard reality to live with. If you are at home with healthy children I know it might be overwhelming. School at home, disrupted schedules, parents trying to work from home, missing our friends, deep cleaning and cooking one million times a day. I know it’s hard, I’m doing it too, but let’s remember to be so extremely grateful that we get to spend some extra time with our children at home. Let’s be thankful that our children are healthy and safe. Let’s make the best of the time while also taking time for ourselves, because I think periodically social distancing from our immediately family is just as real as social distancing from the rest of society right now. What I know for sure is that we cannot let fear and insecurity become an excuse to be unkind. Instead, we can view it as an opportunity to learn, grow and be thankful because anytime we experience something hard it always changes us. Our time with two babies in the PICU left us much more aware, more protective and incredibly grateful. For some of us, the coronavirus will cause true trauma, but thankfully for most of us it will be a mere inconvenience. Either way, I hope when this is all over it will have transformed our communities in a positive way. God can make broken things so incredibly beautiful. He created The Will King Foundation out of our devastation. I can't wait to see what He will create from this. He is good, no matter what and He can be trusted.
Our mission is to support international children receiving heart treatment in Jacksonville, FL.
My name is Courtney Hughes and I am Will's mommy. I am happy that you are here to read Will's story and make a difference with us!