Sometimes D’s issues aren’t obvious, so I don’t think we have hit the worst of the peanut gallery yet. However, Mr. T and I have still had plenty of people say extremely hurtful and inconsiderate things to us about D’s situation. We try not to dwell on them (beyond complaining to each other), but some things stick with me.
One of the exchanges I will never forget was our first time going to D’s weekly PT appointment. At that time, D was on the IV and feeding tube for the vast majority of the day, so he was hooked up as we were in the waiting room. I’m sure I looked pitiful, hauling him in his bucket seat, plus his backpack and diaper bag, with three tubes running. I sat down and was playing with him when I heard a voice say, “Wow, I just hate to see kids with medical equipment.” I said something like, “Well he needs it and it’s keeping him healthy so I’m trying to stay positive.” The guy then asked what it was; I explained it was a feeding tube and an IV, and then he proceeded to tell me how convenient it must be to not have to feed my child, as his (seemingly) perfectly healthy preschooler ran around the waiting room. I just stopped making eye contact and ignored him, but I was so angry and also just wanted to cry. I hated the pity, and the othering – at a pediatric therapist’s office no less! I still don’t have it in my heart to give this guy the benefit of the doubt, but I know that many people may say comments without thinking through them first.
I can only talk about things that are personally offensive or hurtful to me, but I think that they would also apply to many other families who are in similar situations with LOs with either temporary health scares or chronic illnesses. Here’s what I recommend not to say to me, acquaintances, dear friends, or strangers on the street: