I recently posted about Eliza's ongoing, and worsening, eating issues and how basically after almost 9 years of dealing with this I not only feel like the last man standing at the OK Corral, but that it is really a losing battle to ever get good nutrition into Eliza. You know, by eating, the old fashioned way, like 99.99% of the world does, enjoying a meal, maybe trying something new, or even just sticking to a handful of standby foods, which still afford your body what it needs.
Eliza has lately begun to talk a lot about her two new favorite dragons. "Unknown" and the "Night Light Dragon."
Tonight at dinner at her favorite restaurant (yes she has one, it makes awesome Shirley Temples and they refill my wine without having to be asked) she drew the dragons below in her sketch book.
Keeping in mind that pen and ink is not Eliza's best medium, the first dragon below has a long tail, big eyes and a night light (a star, just like Eliza's night light) at the top of what looks to be a long tube.
And it has the words: "Food Goes Here!"
This drawing depicts the dragon named "Unknown."
Unknown has the ability to generate his own food by the combination of water and love (depicted by a bottle of water and a heart). Like the Night Light Dragon, Unknown does not have to eat.
Both the Night Light Dragon and Unknown can eat, if they want to, if it is something they enjoy. But they don't have to eat for nutrition or any of the myriad of things that they cannot tolerate.
I don't know if I am more fascinated by Eliza's creations or scared by them. For her whole life I have managed to avoid having her use a G-Tube. From giving her a bottle every two hours for years, to spending your average American's retirement fund on every kind of therapy known to man and woman (mostly woman since I have yet to run into a male feeding therapist).
But what if this is what she wants? She certainly knows what a G-Tube is and looks like.
When I asked her about the Night Light Dragon and Unknown she said they were very lucky because they were born with their tubes and didn't need an operation to get them.
This whole thing reminds me of two books I read in elementary school, "Karen" and "With Love From Karen" by Marie Killilea. Karen had either cerebral palsy or polio (I can't recall which). She and her family struggled for what seemed like years to teach her to walk. She was eventually able to walk with crutches rather than use a wheel chair. My main recollection of the books was when Karen decided that she would rather use a wheel chair since she could see the world with her head held up, rather than always looking down when she used her crutches. I recall that her family saw this as giving up, but that Karen saw this as freeing herself from the difficulties of walking with crutches, never having her hands free and always looking at the ground, not the sky.
The story of Karen really resonates with me, because it seems to me that Eliza is reaching an age where she is starting to want to decide how she wants to live and what she can tolerate and what she can't tolerate.
We are a society obsessed by food, good and bad, healthy and pure crap. Having a G-Tube and taking no joy in food, save for Haagen Daz ice cream, popcorn and a few other treats is not considered "normal" in our culture and never will be (and certainly is not a diet that can sustain a person).
Maybe normal though is overrated?