This week is Feeding Tube Awareness Week. In honor of that, I have been trying to educate those around me.  I asked a number a group of caregivers (parents/grandparents/foster parents) to share some of their stories with me. Today’s topic is about the things people say to us and to our children. Even when people mean well, their words can be incredibly hurtful. These things have been said to us by strangers, family members, friends, and medical professionals:

• “Have you tried letting them get hungry?” or “If you just stopped using the tube I am sure they would get hungry enough to eat.”
  • Many parents posted versions of these two comments. Some of us (myself included on this one) watched our children almost die because medical professionals didn’t believe us that our child wouldn’t eat. They don’t necessarily get hungry,or when they do, our children don’t eat enough to survive. If it was that simple, they wouldn’t have a tube.
• “Did you try breastfeeding?”, “So you don’t breastfeed?”, or “If you just breastfed your child wouldn’t have ended up needing a tube.”
  • Breastfeeding is a VERY sensitive topic for this crowd. I think I can safely say that almost all of the moms who were able to tried to breastfeed. If we couldn’t do that, we at least tried to pump to give our children breast milk. Some of the moms spend months pumping. Some, like me, had no choice but to switch to formula. We all feel like the whole “breast is best” thing has been shoved down our throats, and we feel incredibly sad and guilty that we did not to experience that with our children.
• “Have you tried giving them _____?”, “I had a picky eater. I gave them _____ and they started eating.”, “I bet I can get your child to eat.”, “If you just gave them kid food, they would eat.”
  • Don’t you think if it were as easy as giving them a different type of food we wouldn’t have ended up with a tube?
• “So when are you taking out the tube?” or “Can you please remove the tube for family pictures?”
  • For most of us, we have no idea.  The answer may be never. That is okay. Our child is here. Isn’t that enough?
• “This is disgusting. You shouldn’t be doing that in public.”, “Can you please feed your child at home, before you come over?”
  • I was amazed at how many parents said they had heard this when feeding their child in public. Breastfeeding moms, you are not alone.
• “What is wrong with your child?”
  • This is one where I know people mean well and are curious, but there is a better way to say this. One mom explained perfectly why this is so hurtful.  Her daughter is a little older and when people say this her daughter hears, “something about me is bad/wrong.” These kids already know they are different and many struggle with confidence. Instead, you can ask the parent or child what the tube is. You can ask why they have a tube (many people are more than happy to educate about their child). Bonus points if you throw in a comment to the child -if they are older- like, “I bet that tube helps make you big and strong!” Make it a positive thing, not a negative one.
• “The tube is just such an inconvenience.”
  • This “inconvenience” saved our children.
• “I wish my kid had a tube. It would make dinner time/giving medications/etc. so much easier.”
  • There is nothing easy about having a tube and none of us have a happy story about ending up with one. Also, there are many other things that come with tubes: reflux, vomiting, chronic constipation or diarrhea, etc. While tubes have saved our children, we do not wish this upon anyone. Although, a little piece of me does recognize that it is nice that my 9 month old does not spit her many medications back at me.
• “I will pray that he/she gets better.”
  • This is one I personally do not have any experience with, but a number of parents posted it, so I am sharing. From what I understand, their problem with this comment is that, in the parent’s eyes, the child is just fine how they are. They are happy and loving kids who are just different. Some of them won’t “get better” because they have a genetic disorder. There is no cure for genetics.
• “Your child looks so healthy. Are you sure they need a tube?”
  • The tube is why they look healthy.
• “I think the tube is just a crutch.”, “If you just took the time to feed your child, they wouldn’t need a tube.”
  • Yes, we are such lazy parents. That is why we never sleep more than a few hours at a time(feeding also happens all night for many of us), we are always running to doctor and therapy appointments, we spend days in hospitals/ERs with our children, and hours researching/asking other parents for solutions to challenges we are having. Yep, that’s it. We are too lazy to take care of our kid…
• “If she eats by mouth, why do they need a tube?”
  • Some kids, like Lyra, simply don’t eat enough. They are working on it, but until then, they need a tube. Also, some kids have medical conditions where they need medications that only work correctly when delivered directly into stomach or intestines.
• Saying nothing at all and just staring.
  • Our child is not a sideshow. Either ask us a question or stop staring.

Okay.  Enough with the negative stuff.  This isn’t everything, but you get the idea. Here are some positive things to say, especially if you are curious:

• “Can I help you? Do you need an extra set of hands?”
  • Especially when something is going wrong during a public feeding, this is SUCH a blessing. You have no idea how much it would help to have an extra set of hands when setting up a feed in public. Most of time I end up feeling slightly frazzled when doing it, so I would love it if someone offered to keep something from falling/spilling.
• “What is your child’s story?”
  • The vast majority of us are happy to educate you about feeding tubes and how our children ended up with them. Our kids are little fighters and we are proud of them.
• “Is it safe for your child to eat by mouth?” – “Do they eat anything by mouth?”
  • This is always a great question before offering a child food (like at a family dinner). It’s just respectful and keeps everyone safe/happy.
• You are allowed to be curious. Just ask us about our children. Like I have said before, we are happy to educate.