Right now, we social distancing from our son. I want to hug him goodnight. I want to give him a high-five when he finishes his school assignments. After I stepped back when he tried to hug me yesterday, he said: “I’m lonely.” It’s incredibly tough not to be able to wrap your kid in your arms, especially at a time like this.
He has Cystic Fibrosis. As tough as staying away from him is, it is for his protection.
Before anyone had any idea about COVID-19 and that we would be living during a pandemic, my own home had infectious disease fears. People we come in contact with are considered possibly dangerous. Hand sanitizing, mask-wearing, fear whenever we hear a cough, avoiding people as much as possible is a life that we have lived for over ten years now.
I hope people are starting to understand what living with Cystic Fibrosis is like. Are you afraid right now? CF patients have that fear their entire lives. Now we as caregivers are terrified.
Everyone turns a blind eye if it doesn’t affect them in some way, and honestly, my son having CF has been a big lesson on empathy on my part. Now I am watching everyone scramble to distance themselves from each other to keep from getting sick. This is how CF patients and their families live. Social distancing and mask-wearing is nothing new to us. Respiratory decline is something my son has had for a while now.
Seeing precautions to prevent the spread of COVID-19 is like looking at our life for 11 years. It is sad to say, but I already feel incredibly prepared for this.
My son is considered one of the vulnerable ones during this pandemic. I would probably be ok if I were to get it, and so would my husband. Hopefully, so would you. If my son were to get it, it would be devastating. This is why staying away from each other is so vital to stopping this from completely taking over. As this virus moves closer and closer to my home, my fears have increased.
During this time, please listen to the guidelines that are given and respect the health of those around you. While this is not an ideal situation for us to be living in, you have to think of those who aren’t as healthy as you are.
When this is over, my hope is that people will pay attention to the diseases that so of our loved ones have. I hope this is a turning point for everyone, and we can start helping those who are just trying to live free as much as possible from the burden of their disease.
