For the past 2+ months most of the world has gotten a small taste of what it’s like to be a medically complex family. Everyone has felt the fear of germs, stayed in the confines of their home when they’d rather be out and about, been considerate of those with underlying health issues, and began being more conscious about the spread of germs. But now that the world is slowly beginning to open up again, will all of you remember this? It is my fear and the fear of most special needs families that you won’t.
I’ve seen so many commercials, news castings, and articles written about how this stay at home order we’ve all been suffering from has been detrimental to the mental health of the general population. As if this is new news. Of course staying home for a prolonged period of time isn’t good for mental health. Which is exactly why most medically complex families suffer from anxiety and depression on a regular basis. You don’t need to tell us that not having the freedom to go out whenever you want sucks, we know it better than anyone. The good news is that for the rest of you, this isolation is only temporary. But for families like mine, it’s permanent.
Everyone complaining about not being able to go out freely for the past few weeks, welcome to my life. For the past three years, particularly from October-March (yes, that’s 6 months people, half of a year!) I have barely left the house because flu season is just too high risk for Madison’s health. You see, when there is no government order reminding people to wash their hands and stay home when showing signs of an illness, most people don’t do these things, and that makes going out too unsafe for my daughter and kids like her. So for 6 months (besides therapy and doctor appointments), I stay home with Madison. I only get out to run errands if my husband or parents are able to stay in with her. Madison is almost 3 years old and has never once been to the grocery store with me. She’s never been to the nail salon with me. I could count on two hands the amount of times I’ve taken her to the mall to shop or return something. These places are just filled with germs and not worth the risk to me. So we don’t go. This may sound extreme to many of you, but until you know what it’s like to see your child fight for their life; to see them on a ventilator struggling to breathe; to comfort them as they’re poked over and over again for blood draws and IV access; then you wouldn’t understand, and I don’t expect you to. I would literally stay home forever if it meant that no child would have to suffer the way Madison has.
When this whole thing started I was shocked at how many people needed to stock up on basics like hand sanitizer. This pandemic didn’t begin over the summer, it began during flu season. The fact that people didn’t already have preventative items on hand just goes to show how little most of the world worries about germs on a regular basis. Whereas we had a box of hand sanitizer, Clorox wipes, face masks, gloves, etc all on hand. And most medical families will tell you the same. We’re prepared for germs 24/7 because we have to be.
And while I don’t want the world to be shut down forever either, for a short period of time everyone knew what my life felt like. We were “all in this together” as I’ve seen so many people share across their social media accounts and in news segments. But now we won’t be. You will all get to go on living life freely, while families like mine will still have to limit their interactions with the outside world. And that’s okay in some ways too. The medically complex world doesn’t expect the rest of you stay inside forever just because we do. You are fortunate enough to not have to worry that the common cold might kill your child. We’re not as lucky. And now we have another virus, a highly contagious one at that, to add to the list of things we’ll need to worry about our kids catching. A virus with no vaccine. A virus we still don’t know much about. But that’s the way it goes.
I am asking though, as the world reopens, that you please remember us. Don’t forget that not everyone will be able to jump right back into the luxury of going out anytime, anyplace. Remember that some of us never have that luxury. Remember to continue to halt the spread of germs by washing your hands frequently and carrying hand sanitizer with you to public places, especially during cold and flu season. Remember to stay home when you feel sick. Please stop writing a cough off as “just a cold” and continuing to go out. There is no such thing as “just a cold” for people like Madison. That’s all it takes for her to land in the hospital on a vent. The forced stay at home order may be coming to a close, and that is truly something to celebrate, but please don’t stop being considerate of others health. Remember the time when you too were afraid of germs. Don’t forget about us when this is over.