How to Help Families of Medically Complex Children as the World Opens Back Up

It’s not you, it’s us. We know you are tired of wearing a face mask, we know you don’t want to feel restricted anymore, we know you miss us and you are simply exhausted.  So are we. Please trust me we are beyond tired and miss you more than you know.

When the pandemic began it quickly became clear this was going to become a historical event. It was then we decided we didn’t want to live with any regrets, that we wanted to walk away proud of the choices we made during this moment in time. Having a medically complex daughter we were socially distancing before socially distancing was the cool thing to do, and facing the coronavirus we found ourselves in a situation where we needed to make a drastic choice. We do not know what the implications would be if COVID-19 virus were to find its way into our girl’s fragile body.

We spent an entire year isolated from the outside world: no trips to the store, no family, no friends, no contact of any kind except traveling to the hospital and clinic visits. We have been sad, lonely, anxious — you name it we felt it this year (we know you felt this too). Now with the help of vaccines, cases are starting to decrease. With the slower spread and the knowledge we have gained about transmission this past year our family is starting to open up just a little. We are able to see family and friends outdoors where the risk is low. But in order for us to do this we need something from you.

For years you have offered your help to us. You have always told us if we need anything at all don’t be afraid to call. Up until now we most likely haven’t taken you up on this offer. Now is when we need you most. We don’t need a casserole or a carpool, we need your respect and understanding.

Respect means that you wear a mask when you are near our daughter. We know you are outside — it’s hot, we get it, but please mask up anyway. This could save her life. Please understand that our rules are constantly changing as we try to navigate this volatile world we are living in. Always feel free to ask us where we stand. We will not be upset; we know it is hard to keep track of current “rules.” We encourage you to talk to us openly. Throughout this past year we have learned that open communication is crucial in continuing positive relationships.

However, when you communicate with us please refrain from pushing your opinions on us and in return we will respect the decisions you are making for your families. Understand that just because we are choosing to live differently than you does not mean we are judging you or the lifestyle you are living. We all have unique situations we are navigating. As a result of our circumstances we will not change our stance on vaccines, masking and social distancing. We have had a lot of time over the past 16 months to research every side of the issues. We know where we stand. So while we welcome open dialogue, please do not go on a tirade pushing your ideals on us. It won’t change our opinions, it will just leave us feeling as if you don’t respect our boundaries. We have missed you, let’s agree to disagree and use this time to reconnect.

Life for us won’t return to a new normal for a little while still, so until we get there please help us feel comfortable in the social situations we are able to feel safe in. When we don’t come to an event, or we ask you to mask up, please remember: it’s not you, it’s us.