Monday morning. No camp this week, it is just Maggie and me again. She is still a bit blah, but not really sick enough to go to the doctor or anything. We will just take it easy this week with short outings.
The Girls Rock camp last week was great, but it was exhausting. As the week goes on, the girls get more comfortable with one another and with the adults in the room. They also get more comfortable advocating for Maggie even though they do not have a complete understanding of what is happening with her.
Every time I fed Maggie, one or more of the girls would ask what I was doing. Fair enough. It is not every day one sees a person being fed a can of “medical food” through a gastrostomy tube. It is fascinating to watch and a bit difficult to understand, so questions are normal. Most girls asked once, looked, were impressed and moved on. A couple of the girls asked the same questions over and over. That is fine too; it is part of this world I live in. If I want them to understand and tolerate Maggie’s differences, I need to be tolerant of theirs. And I am, but I would be lying if I did not admit to some frustration. Two of them were
quite insistent that Maggie was not getting fed, despite my patient explanations about how she eats.
On the last day, there was a party. The girls made the food -- wrap sandwiches and quesadillas. They also made cupcakes and frosted them and we made frozen yogurt. Of course, Maggie cannot ingest any of those things; but Maggie does not care. She is just pleased to be at the party.
That was not enough for two of the campers, though. They asked repeatedly if Maggie could have a sandwich. I smiled and said, “No, she can’t swallow it.” They tried again, “How about a quesadilla?” “ Nope. Besides, she is allergic to cheese." I told them,” you guys remember I just fed her and you asked about it, right?” They would not budge, “That’s was only something to drink. She needs food!” I said, “You know girls I wish she could, but this liquid food is all she eats.” They stared at Maggie and then looked at each other (contemplating a call to Child protective services, I am sure.) Variations of this conversation went on for several more minutes. Finally, one of the asked if Maggie could not eat because the trach tube got in the way. Though it was completely incorrect, I said yes.
Sometimes it is easier to ride a horse in the direction it is going.
That is right. In this educational camp, giving girls an opportunity to ask whatever questions they want in a safe environment, I lied. I am not proud of that, but the questions stopped. I doubt it will change their lives in any way at all, but I worry about either of them racing in to stop another child with a trach from enjoying a piece of birthday cake or something.
School starts one week from today. I am more than ready for a routine to return to this household. The fact that the school routine also gives me an opportunity for solitude after weeks of none is only incidental, I assure you. I am interested ONLY in my daughter’s education.
The incessant questions made me tired just reading them. I know how much you look forward to Maggie's continued education -- and one of these days I'm going to come up there and relieve you of your solitude!
ReplyDeleteIt would perhaps help to explain that her cans are a whole food, more like soup than a drink, and be clear that it is a complete meal for her and that she has everything that she needs.
ReplyDeleteMaybe the other thing the girls were trying to figure out is whether she can eat at all, and if not, why not - so a little talk on how just as her CP affects her legs and arms, it also affects the muscles in her mouth and throat, the ones a non-disabled person would be using for talking and swallowing - hence why Maggie has a Dynavox and a tube instead!
I always end up reminding myself, repeatedly, that curiosity is harmless... and ignorance is not.