I love food. Everyone does. It satisfies, nourishes and provides social opportunities for everyone. We gather over dinner. We meet for lunch. We go out for brunch. We celebrate with food. There are birthday cakes, wedding banquets and dinner parties. We also reward ourselves with food. Dessert? Why not? I deserve it. Personally, I have been rewarding, nourishing and celebrating excessively, but that is a completely different story.
We have so many options. There is food for every taste and mood. Within six blocks of my house, I can get health food, junk food, Mexican food, seafood, Chinese Food, Thai food, Japanese Food, Burmese Food, comfort food and many other types. It is culturally specific and a common denominator at the same time. Everyone eats. Food brings people together in every culture and across cultures.
Think about your childhood, or about your own kids. Every kid has their likes and dislikes about food. For some it becomes defining. My older son was so picky I made a separate dinner for him until I wised up when he was about eight years old. My sister did not like to drink her milk and when my parents stopped nagging her about it, she found it was a good place to hide her peas. She eventually was caught. Ha! Kids and food are good fodder for stories.
Maggie does not get to take part in any of that. She is fed through a tube in her stomach and has been since the day she was born. That is 14.5 years of exclusion from all the cultural, social, and other aspects of eating. Further, she has never tasted any of the plethora of cuisines available in our neighborhood or any others. This does not mean that Maggie has been excluded from celebrations, she has not, but she cannot take part in them as others do. She does not get to take part in the passing of food or the likes and dislikes of particular dishes. Her wheelchair does not even come all the way up to the table so she sits a bit back from everyone else. That mean she is physically removed as well.
Maggie occasionally visits schoolchildren to explain and educate them about her differences. Of all the questions they have asked over the years, my favorite has to do with the feeding tube. A little girl asked, “How does she eat chicken?” The child could not fathom that Maggie’s different way of eating encompassed different food. The answer, of course is, “she doesn’t.” Not chicken, not birthday cake, no vegetables, not anything. She eats a medically prescribed liquid food called Vivonex. It is delivered once a month in several cases of 8 ounce cans.
Maggie’s communication device comes with several phrases already loaded. One of those is “what are we having for dinner?” Ironically, she loves to hit that over and over. And every single time I say Vivonex with an excited voice and every time she laughs her head off.
I am generally numb to this. It's just the way it is. That feeding tube is her lifeline – or one of them. Without it, she would not be here, so I am thankful for it. Nevertheless, occasionally it just strikes me as so completely unfair.
Today is one of those days, and it hit me for the strangest reason.
Mother’s Cookies closes its doors today. I will miss those crunchy oatmeal cookies dipped in milk. Maggie won’t becasue she never tasted them or any others. That's just not right.