“What’s wrong with the baby”
Some people don’t know the most respectful way to ask about Maddison ’s feeding tube. On our most recent trip to Kelowna we encountered that exact insensitive question, “what’s wrong”. But the man it was coming from was not asking it to be rude, he was genuinely curious, and quite nice. It may be that his generation doesn’t tip toe around the bluntness of questions they want to ask. Or maybe in his time things like disabilities weren’t as accepted or talked, so it would be viewed as something “wrong” with the child.
Intuition is key
Regardless, my and my husbands’ intuition when people ask us such questions is pretty sharp. If someone asks me a question about my child, however it may be worded, if they ask with genuine care and a smile on their face then I’ll smile and answer politely.
Depending on the generation the question is coming from, like from an elderly person, I feel no need to insult the person asking or make them feel terrible because of the way they asked their question. They may not realize their question came across as insulting. There is more I take into account than just words when I’m talking to people about Maddison’s special needs or disabilities.
I will explain that Maddison is medically complex and she has a feeding tube as a result. But I always take the time to remind them that she is my joy, she is loved, and that she is so much fun. In our eyes there isn’t anything “wrong” with her, but there is no denying that she is different.
How to ask the right way
Yes, there is an appropriate way to ask about the feeding tube, and I have some simple steps in my blog post on talking to parents of tube fed children.
As Maddison’s mom, I am already dealing with a lot emotionally about our situation. Yes, I love my daughter so very much, but she does require a great deal of my time, emotions, energy and mental capacity – a lot more than a healthy child. So asking a tired, possibly heartbroken parent, “what’s wrong with your child” could really push their emotions to a breaking point. It’s insensitive, and says, “I don’t really care about you or your child”.
Getting out of the house
I loved being able to take Maddison on her first mini vacation. Getting out of the house is very important to me. Not only does it expose Maddison to the world, but also exposes the world to Maddison. My hope is that that more people are exposed to the normalcy of feeding tubes. The more people are educated, the more they can be accepted. Similar to the breastfeeding in public normalization movement, I am feeding my child, that’s it. I care for her feeding tube as I would as if I were offering my son a snack. There is no shame doing it in public.
Yes people stare. It’s kinda to be expected when they encounter things that are new. That’s when I try to catch their gaze and offer a smile to show them that I’m kind and approachable. I feel as if I am doing the best I can for my daughter by trying to prepare the world for more acceptance.
As a parent of a child with special needs and disabilities I need to have thick skin. I cannot be offended by every question or inquiry about Maddison. I don’t want people to feel like they have to tip-toe around me because they fear their questions will offend me. My purpose is to educate and spread awareness. In the process I will encounter people whose words about my daughter may sting. But I know the truth. The words of a few cannot be louder than the words of the One who created her.
I praise you because [Maddison] is fearfully and wonderfully made; your works are wonderful, I know that full well.
Psalm 139:14 (NIV)