I have to say that I’m fortunate to have a good support network, including some fantastic friends who don’t bat an eyelash when I do certain things with Judith, or have to cancel at the last minute because something happens with her and we have to add an extra treatment, boost her miralax for the beginnings of a clean out, etc. There is, however, something that has been bothering me since the weekend, and I think it’s the timing because there’s a lot of stress in my life right now, which in turn can affect my mood. I know it’s little things that shouldn’t bother me, and even though we’re still relatively early in our CF journey (although almost 4 years feels like forever) you’d think I’d be used to the weird stares, comments, and judgments from strangers. I never quite understood the judgy, sanctimommy/sanctidaddy mentality that can plague some parents these days, but really, this is something that has got to stop. You just don’t know what the person you’re trying to chat up is dealing with, and there’s probably a darn good reason for them doing something the way they are.
One of the things I really strive to do is advocate and bring awareness to CF. It’s a fact that an orphan disease is not going to be encountered as frequently as something that is much more common, and people won’t know a lot about it unless they have experience with it. That’s why I feel like I need to address some things, to get it out in the open. Partially for my benefit, because I feel like I’m going to explode if I don’t, but also to try and make a difference. If it causes someone to stop and think before being really openly judgmental, then I know it will have made a small difference.
Please don’t stare at my child like a freak if she’s melting down before or during a procedure. There could be any number of reasons that trigger this reaction. For her, one of them is due to the fact that she’s been through a ridiculous amount of procedures in her short life, and she’s over it. Now that she’s at an age where she can understand what’s going to happen before it happens, it can make things trickier. It’s embarrassing enough when she’s having a meltdown in public, but to have really judgmental stares levied on us doesn’t help.
Why yes, we are aware of the obesity epidemic in this country, and are aware of the dietary guidelines pediatricians recommend! We offer plenty of healthy options, but guess what? Those dietary guidelines go right out the window with a disease like CF, and you have to pump a ridiculous amount of calories into a small body to get her weight and BMI to a level where it’s going to give her a better chance at better lung health. It’s not easy when your child needs to eat more calories than many adults. So you can stop right there with your side eyeing and judging when I offer high calorie things in large portions when a typical kid should receive a smaller portion or not eat that particular food often. If you think Paula Deen uses a lot of butter, you need to spend a day with a CF family. I’d be willing to bet large sums of money that the amount of butter Ms. Deen uses in her cooking pales in comparison to the amount of butter CF families consume in any given year. And no, I’m not setting my kid up for a life of early onset hypertension by salting her food, nor are we neglectful parents for allowing her to have all of that sodium in her diet. Salt is necessary for her to have so she can replace what she’s losing, and this is even more important in warmer weather. You worry about what you and your family is eating, and I’ll worry about mine, thank you very much.
I know this one is hard, because of the stigma that often goes with a surgical mask, but please don’t make snide comments like she has the plague when you see her wearing a mask. Not everyone who “masks up” is sick; there could be any number of reasons why they’re doing it, and it’s likely they’re doing it for their own protection so they don’t catch something from you. I know, it’s hard to discern who really is sick and who is doing it for their own sake, but I guess the big issue I have is when people make audible comments about it. No need to be rude. If you’re unsure, it’s perfectly ok to quietly move away and move your child away (if you have a child with you), just don’t be a jerk about it.
Conversely, if I’m quietly moving my child away from yours after you stand there and loudly declare about how her twin sister was actively puking in the car on your way to the building, and both have been coughing a lot recently, don’t make nasty faces at me or judge me for doing what I am. Just like you might feel a natural inclination to move away from someone you see wearing a mask, I feel a natural inclination to go into protective mama bear mode and minimize the risk of exposure to whatever illness your child has all while trying to teach my child to move away from and stay distanced from people who are sick for her own protection. Yes, you are right that kids pick up germs, and will be exposed to them. I get that. I try not to keep my child in a bubble even though there are plenty of times when I want to seal her up in one. What I’m trying to do, though, is minimize the potential for something to set up shop in the extra thick, sticky mucus in her lungs and cause irreversible damage.
Lastly, don’t minimize what we’re going through, and please don’t compare it to another disease. Every disease or condition has it’s own challenges, and they can’t really be compared. If we’re opening up and talking to you about something that may scare you, don’t brush us off and tell us it can’t be as bad as what we think it is. Truth is, it might be that bad or worse. It could end up not being as bad as we think it is. We just don’t know, and the unknowns are scary. Oh, and please don’t dismissively tell us that our child will “grow out of this.” All that statement does is show your ignorance about the disease, and it manages to piss us off. Do we expect you to go out and research every last detail? Heavens, no. That’s unrealistic. All we ask is that you don’t make an asinine statement along the lines of “growing out of it,” and if you’re unsure if it’s curable or not, ask. We’d rather take a few seconds to answer your question and help you understand than dealing with the raised blood pressure that’s going to result from you not checking your filter before speaking.
I know this was an especially long post, but thank you for bearing with me.