As we approached Feeding Tube Awareness Week, I have found myself reflecting upon a time when I was completely oblivious to the concept of tube feeding.
Prior to two years ago I could not have told you what a g-tube or ng tube was. It has become such an enormous part of our lives that sometimes I forget that I myself was completely unaware of it until recently.
My daughter is our one and only, so I have no other parenting experience to compare to.
The idea of a child telling me they are hungry, and me fixing a meal is a foreign concept to me. All she and I know is a strict schedule of mealtimes that are carefully planned for her caloric needs.
I frequently let her try different taste and textures, but she shows little interest in it. She finds eating in the typical sense far more stressful than her g-tube feeds.
I find myself having anxiety feeding in public.
I know the stares and sad looks we will be on the receiving end of, so I tend to schedule feedings at times when I can have privacy.
It’s a part of myself I am not proud of. I want to be the person that advocates at all times, and that was not so concerned about others opinions. It’s just one of those easier said than done things.
When I am truly honest with myself, I often wonder if I might not have given curious stares watching another mother tube feed prior to all this. I’m trying to become better at seeing through others perspective.
Sometimes being a special needs parent can jade you to the reality that it is truly human nature to be curious.
When you feel like it’s you and your child against the world, you automatically become defensive to the people around you.
Moving forward in this journey I hope to improve upon my patience with others.
That their looks are not meant to be malicious, but just curiosity.
I want to educate rather than judge. I want people to know she is happy and healthy despite being unable to eat orally.
I want people to understand that we do not look at the tubes with disdain. We look at them as a tool that facilitates her to be with us today, and we are eternally grateful for that.
Because at the end of the day, fed is best.