I’m an eternally optimistic person by nature. I like to think that my almost 6 year old will sometime-eventually-learn how to eat.
I often get asked by family, friends and strangers alike “will she always be tube-fed?”
Well, my heart wants to immediately respond in confidence and full assurance “NO! She’s going to learn how to eat!”
I am clinging to the hope, the sometimes distantly looming hope… that she may eventually, in her own time, decide and learn how to eat and drink by mouth.
Sometimes I feel guilty or bad, that we haven’t done and aren’t doing everything we can to help her learn to eat.
Negative internal voices sometimes tease: you must be doing something wrong, surely she should be eating by now!
But in all honesty, I don’t know what more we could have done with her or are doing.
It can be downright exhausting - feeding therapy and everything that goes with tube-feeding your child.
Brielle has always depended on artificial enteral feeding, since she was a teeny premature baby weighing just 810g. Her nostrils were too small to pass a tube through for the first few months, so she needed an orogastric tube initially.
She came home from hospital six months later with a gastrostomy tube.
We’ve worked with so many specialists and therapists. She’s even been on an intense feeding program at the Children’s hospital.
We will continue to work with the speech and language therapist, and offer her oral stimulation and pureed food and thickened drinks as she tolerates.
I really just don’t really know if she’ll always be tube-fed. I certainly hope not.
Eating is such a social and fun everyday activity, and it would be so lovely to see her enjoying her food by mouth.
Oh how I would SO LOVE to do away with all her syringes, extensions, replacement buttons, and everything related.
I would love her to eat like her big sisters.
But do you know what? She may never be able “eat”. And that is ok.
We just want to give her many opportunities, and see where she goes with them, in her own time.
One thing we’ve learned with Brielle is that she will set the pace and decide what she wants to do.
Our job is to support her, love her, open up the world to her, and see how she blossoms.