Social events and situations can be difficult to navigate when you suddenly become acutely aware of the billions of bacteria present on literally everything we touch. I considered myself cognizant of cleanliness and sanitization before N became immune suppressed. But since he’s become so vulnerable to infection and disease, my sensitivity to these things has increased about a hundred times over.
Whenever we go out to eat, I always take a Lysol wipe to clean any surfaces I think N may be able to reach, to include the sides, and often the underneath of, the tables themselves. Typically I get stares from other patrons, offended looks from the wait staff (I would be offended, too, if I thought someone didn’t think I’d cleaned my tables!), and sometimes I even get comments (“We wipe our tables between guests, just so you know.”). I just smile, because frankly his health is far more important to me than stares or comments. You know what they don’t typically wipe, though? Menus. Table advertisements. Condiment containers. These we just move out of reach, because who really has time or energy to wipe these down every time you go to dinner? It’s easier just to wipe his hands if he touches something. I’m not that crazy. Yet.
When the environment is small, like a family outing, and I have reinforcements (my husband and mom are terrific about also wiping everything down and making sure people don’t touch N), I feel like I can maintain control. But when there are lots of people, or I can’t Lysol everything, I get freaked out about germs. I become painfully aware of everything we all touch, if we then touch N, what he’s touching or putting in his mouth. My chest gets tight, my mood changes, and I become hyper-possessive of him, because if I’m holding him, I’m in control. But I can’t always be that way. Eventually, I have to let go.
Luckily, most people are very understanding when they are aware of the situation. We recently attended a birthday party for a boy N’s age whose parents are dear friends of ours. They took the time to wipe down every ball in the ball pit with a wipe, and they cleaned off other toys and surfaces available for the boys to play on, as well. I felt like N was just another normal kid, because they had taken the germ worries away for me. This is when I realized that people “get it” if you are open and honest with them. When we had N’s first birthday, we had friends cancel because their small child was ill, and they didn’t want to risk passing that illness on to N. We were disappointed they couldn’t make it, but we were so grateful they were considerate of N’s compromised state.
I wanted so badly to be a hermit about everything and keep it all contained. I know now that it’s not possible to do that. But it’s also not helping anyone, especially us. When people are aware of the circumstances, they can be part of your village and help you remove some of the uncertainties about social events.
Another very dear friend of mine who knows N’s story contacted me about whether or not she should take her child to Bible Study when he was running a fever and another child there was sensitive to febrile seizures. She wanted to get my opinion on who should stay home, her son or the other child, because she didn’t want to be insensitive to this other lady’s circumstances. This will be the case far more often than not. Sure, there will always be a confrontational situation where “that one person” is just being a turd and brings their sick child no matter who they inconvenience. But this is not the norm.
So how do you approach people who bring their sick kids to social events (or daycare/school), or come sick themselves? Do you even approach them? Do you just go home? Do you ask them to leave? Do you awkwardly avoid them at all costs?
For me, like so much of how we behave, it’s very situation-dependent. If we’re with friends or family, I have no hesitation about handing them a medical mask or asking them to stay away from N (and us, because if we get sick, he can still get sick!). If it’s a stranger, I just try to avoid them and make sure I’m hyper-vigilant with washing ours and N’s hands. If it’s coworkers coming in sick, I either avoid them or remind them that it’s not worth coming into work and contaminating others, especially since I have a compromised child at home. If they get upset, they get upset. I am in no way a confrontational person. Conflict actually nauseates me. But when it comes to keeping N safe, I go into Mama Bear mode, and sometimes that means being a little confrontational. If it comes to that, I ALWAYS try to be as polite as possible (sometimes this is rather difficult…). More often than not, there isn’t any pushback. But if I were to go in guns hot, I’m sure that wouldn’t be the case. Try to check your emotions if you do decide to confront someone. You can catch more flies with honey, after all.
And the good news is that there is a cultural shift occurring in the United States right now where those who are sick stay home, and those who are immune compromised (or even have severe food allergies) are no longer viewed as an inconvenience. People are becoming more sensitive to the needs of others with regards to these issues, and it’s wonderful! And why is this happening? AWARENESS. When we are aware of the needs of others, we can be mindful and helpful in fulfilling those needs. So don’t be afraid to share your child’s special circumstances. You’d be amazed at what people can and are willing to do to help. Remember, it really does take a village.
[I] make sure I wash my hands and don’t touch my face or anything unnecessarily.
I don’t approach people who bring their kids to events or go sick themselves. It’s really annoying, but I just either stay away from them or leave. I’m not really a confrontational person, so it would make me uncomfortable to approach someone about that. I’m not really a ‘germaphobe.’
-Laura Hofheins, 27 years post heart transplant
Immune suppression has been an issue for Davis. He struggles with neutropenia. We pray his team will find the right meds and doses to make this better. In the meantime, we take extra precautions. Many times this means not leaving the house. It’s a struggle to live a so called normal life.
During large social gatherings, we take extra precautions. We keep hand sanitizing wipes, hand sanitizer, Clorox wipes, and mini Lysol spray in our diaper bag. We wipe everything off before Davis touches it. We wipe his hands with a hand sanitizing wipe often.
It infuriates me when someone brings a sick child to an event. I really have to remember that that particular person may not be as educated or aware of germs as I am. We usually leave, but I have certainly wanted to ask other parents to leave. And honestly, I don’t care if I’m known as the germaphobe parent right now. I’m sure as the boys get older, they will want me to tone it down a bit, but their health and safety are my top priorities. They will just have to deal with their germaphobe mom and dad!
-Amanda and Tucker Boswell, son Davis 15 months post heart transplant