It is Feeding Tube Awareness Week…so it is time to focus a bit on feeding tubes. First some brief background on Esmé’s tube: Esmé’s abdominal feeding tube (g-tube) was placed when she was 3 1/2 months old. Because Esmé had significant low tone and poor suck and swallow coordination, the milk Esmé drank by mouth in her first three months was often leaking into her lungs. She was, effectively, very slowly drowning. This had the effect of making her sicker and weaker, which made her less and less able to protect her airway, so more food went into her lungs, and so she got sicker and weaker…and so on. Eventually the amount of fluid in her lungs made her sick enough that we came very close to loosing her (I won’t re-hash more here, but I tell the full story in this book).
This year’s FTAW theme is “The Power of Tube Feeding.” Much of what I have written in previous years could fit that theme. For example I could have retold the story behind Esmé’s tube, shared tips for those who are new to tubie feeding (and also for the people who love them), talked about why I love my daughter’s tube, and written about why feeding tube awareness is so important.
However, what I want to talk about is the memory that immediately came to mind for me when I heard the theme. I wasn’t sure why it was the memory that played in my mind when I read the words “The Power of Tube Feeding.” But there it was…so I wanted to think about why.
It is a memory of tube feeding Esmé in a mall years ago. Esmé was perhaps eight or nine months old, and I was getting good at feeding her in public, but Esmé was very fragile and unpredictable and I was still struggling to come to terms with the reality of Esmé’s disabilities. This all had the effect of making me feel quite vulnerable when we were out in public.
As I struggled with holding Esmé in one arm while accessing her tube to begin venting and feeding her, I looked up and saw a man, who was around my father’s age, boldly staring at me, at Esmé, and at my feeding her. When I looked at him, he didn’t look away (as so many people do when they are caught staring). He also didn’t offer a kind-hearted or sympathetic smile (what the majority of the non-look-away-ers do).
Instead the man just stared at us.
His face reminded me of rubber-necking drivers–some combination of fear, curiosity, and horror. At first I flushed under his gaze, embarrassed. And then stared back at him, trying to match his expression with my own. But it was as if he didn’t see me…or rather, that he saw me, but saw me as part of the object made from me, my daughter, and her tube.
So I crossed my eyes at him and stuck out my tongue and then smiled broadly…and he quickly looked away, annoyed.
I felt some anger creeping up, but then a funny thing happened. I felt my daughter’s strength–her will to live, her determination. I felt the importance of this tiny little piece of plastic in her belly…the thing that was absolutely the difference between my having Esmé in my arms or not.
And, I guess this is why the memory came to my mind with the words the power of tube feeding, I felt my daughter’s power, the power of her tube, but also, I felt powerful in that moment.
I didn’t feel angry. I felt pity. I felt sorry that he didn’t understand, and that he was probably never going to, unless something significant changed in his life.
There is an odd power in those moments when we stand apart from others because in those moments we can see banal things with an unusual amount of clarity. The fact of someone staring at us doesn’t actually say anything about me or Esmé or about her tube. But it does say a whole lot about the person doing the staring.
That is sort of one those big things about people–if you pay attention, they will tell you everything you need to know about who they are. There is power in that realization. And that is one of the unexpected gifts from having Esmé in my life–people are clearer to me now. It isn’t that they make more sense, it is just that it is easier to figure out who is brave enough, who is kind enough, who is curious enough, who is honest enough for me and my girl.
There is nothing quite like bit of stomach contents launching out of an open syringe to help you figure out who is squeamish and who has a decent sense of humor.
Of course, in many ways this has nothing to do with tube feeding. I’ve had similar experiences while people have stared as my daughter uses her gait trainer, as she rocks her body hard against her wheelchair and giggles, as she babbles and drools, and, most upsettingly, as she seizes in my arms. However, this one always stood out to me (perhaps because he made me think of my father and I’d hoped for a bit of extra kindness).
But it wasn’t really a lesson about tube feeding. It was a lesson about life, brought on by tube feeding. It was a lesson about how difference can be power. And it was a lesson that some times people are just so ridiculous that the only thing to do is cross your eyes and stick out your tongue.