This is the number one question we hear from family members and friends. It doesn’t always come out explicitly and sometimes it’s not even clear. I can see it in their eyes. They want to help and they have no idea how. They feel powerless and it doesn’t feel good. It’s uncomfortable, confusing, and frustrating.
It makes it even more difficult that we don’t always have an answer. Feeding our son isn’t as straightforward as it is for most kids. If someone does watch our son for us we need to be back before it’s time for him to eat. Some aren’t comfortable watching him at all because they don’t understand what it means to have a feeding tube or how to handle an emergency.