Parents whose children have struggled similarly to mine often face significant trauma triggers, and sometimes, our response to these triggers can unnecessarily stall the progress we make in weaning our children safely from feeding tubes. The minute we hear a cough or baby cry, the second there’s a gag, cough or hiccup – panic sets in. Because to a medically complex kiddo, every scenario feels like a medical emergency, even if it isn’t.
When one of your kids is tube-fed or recently weaned, it’s easy to overlook the other kids at your dinner table, or forget that safe and joyful meals are just as important for non-tubies as for tube fed kids. I learned this the hard way – that there are a few things to be aware of when your tubie is not an only child.
I learned how to let go of my anxiety-ridden control tactics, and my daughter found her appetite and learned to eat happily and independently. But that took time, patience, and a lot of help. And looking back, there is one thing that I would tell that tired, frustrated mom who skipped Thanksgiving dessert to cry in the bathroom.
When starting a wean, there are so many questions. One of the recurring fears that I discuss with parents is: What if this doesn’t work, where do we go from here? When tackling this answer, it’s really important to back up a step and to start with another question: How do we define success and “working”?
