Why Pandemic Decision-Making Is Complicated When Your Child Has a Rare Disease

Everyone struggles at times when it comes to making a decision. You never know for certain if you will be making the right choice or if unforeseen issues will arise with your choice.  Some choices you make will be well thought out, while others will be done in the spur of the moment. For the average person, making the wrong decision might cause some minor problems or setbacks, but it probably won’t mean the death of your child.

In my experience, when you have a child with a rare disease, every decision you make has to be well thought out. The pros and cons must be considered first. On good days, decision-making is hard and involves a lot of time and effort. Throw in a global pandemic and that decision-making process has only intensified and become even more overwhelming. Almost all decisions that are made when it comes to my rare disease warrior, his siblings or even my husband and I are filtered through a risk vs. benefit filter to determine if the risk is worth the benefit. Once we determine if the risk is worth it, we then run it by his main doctors to see if they agree with us. Some of the choices we have made to benefit our son and his brothers might not make sense to someone outside our nuclear family, especially during this pandemic. Some of the things we see as risks might not seem like risks to others.

I understand that, and I know how hard the ramifications of some of our decisions have been on our sons, our family and others. I know family and friends are missing seeing our kids in person. I know my kids are missing out on things they would love to do. I know some things do not seem fair. I suffer with the weight of that myself, but what I wish everyone understood is that all the decisions are made with our rare disease warrior’s needs and limitations first, then his siblings, then my husband and I. Right or wrong, other people do not come into the equation.

Since the global pandemic started, we have been on a strict lockdown.  For months our goal was to eliminate any risk of our rare disease warrior getting sick and dying. Given his underlying conditions, especially the pulmonary ones, death was very likely at the beginning.  No one knew what was and wasn’t going to cause us to get sick. We were vigilant, having things shipped to us, wiping down the mail, not seeing anyone outside the 5 people that lived in our house, tele-visits with doctors, and video chatting with family. It was hard and overwhelming and wreaked havoc on all of our mental health, but it was what we did to stay safe and keep our son alive.

As things in the pandemic evolved and knowledge of COVID has become better, we have started looking at how to open our lives a tiny bit for our mental health. This has taken sacrifice on the part of others to help us get help and some relief. A couple of family members quarantined for two weeks to make sure they were not sick before interacting with us and stayed isolated for a period of time so they could be around us. The few people that are able to do this and see us have to live in a bubble and sacrifice seeing anyone else and doing anything else in order to keep us safe. This has helped all of us in terms of mental health and even the logistics of having three small kids, virtual school and therapy, and two adults working from home. It is still scary and we still wonder at times if we are doing the right thing opening up to a “pod.”

As much as we want to live in a bubble to stay safe, we have to start looking at how to move forward and that is extremely scary. Moving forward for us is going to mean minimizing risk as opposed to almost eliminating risk. But the question is, how much risk are we willing to take? How much risk will we allow into our son’s fragile life? Will we know we are allowing too much and be able to adjust before it is too late? We don’t want to risk his life, but we also need to look at our family as a whole and our mental health.  How do we make good choices and take reasonable steps forward when fear and eliminating risk have been our direction for the last year?

There are no easy answers. We are not alone in trying to navigate these hard times. Every family is feeling the weight of trying to decide what is safe and what is not. This process is just extremely magnified for many of us who have kids with rare diseases. We spend many hours weighing out options and coming up with new options. In some ways, it feels like even if we are responsible and do things in the best way possible and with the approval of our doctors, we are risking our son.

The mental stress and anxiety surrounding the decision-making process during these times is beyond overwhelming in and of itself, and then if you throw in other people’s thoughts, feelings, and opinions it gets even worse. The weight of decision-making has always been heavy, but now thanks to a global pandemic, at times, it has been almost too much to bear.