She Will Amaze You

Aside from the meds in the morning, and the shots at night, I try my best to downplay Ellie's PWS. I've gotten really good at makings small talk about her size, about her growth, and I'm pretty good at convincing others that she's just a tiny peanut. But then, when I least expect it, everything comes crashing down and it feels like I've been kicked in the gut.
This morning was hard for me, and it was hard for Ellie. Her obsession with food is just so, so strong. I can't even begin to describe to you what it's like, I can barely wrap my mind around it. Today, we went berry picking. It was the third time in a week we've been, and two days back to back. Ellie is extremely bright, especially when it comes to things food related, and she knows that berries in the patch equate to berries in the belly. The past two times, she's been allowed a berry or two while we've been picking. Today, I didn't want to put her in the wagon, while watching Jakob and simultaneously trying to pick as many berries as possible, as quickly as possible. I put her in the sling, and got to work. Two minutes in, she started crying. A minute in to that, she started wailing. I couldn't hear the conversation I was having. I couldn't hear myself think. All I could hear was her crying.
Someone laughed and joked that she just wanted a berry. If only it were that simple. If only one berry would make her happy. One berry in, she would expect another, and another, and her cries, and her sobbing pleas would only get louder and more heart-wrenching. Today, I did not give in.
We hurried to fill one basket, rushed to pay, and sat down for a picnic, right on time with her normal feed. I gave her her regular, calorie counted, lunch, followed by one strawberry. As there always are, every time and without fail, tears and theatrics followed the last bite. She wasn't happy until all the food was away, and it was out of sight. The cries tear at my soul, and I feel like a terrible parent.
Can you imagine never feeling that amazing sensation of being satisfied after eating? Isn't that why we love to eat? Eating is all about the experience of satisfying hunger. I love to enjoy my meals, to stop at just the right time so that I feel thouroughly sated and not overstuffed.
Ellie never, never feels satisfied. All she wants is more. All she feels is hunger.
She is a skinny little munchkin these days, perfectly in the range the doctors want her to be. People *constantly* comment on how small she is, how cute she is, how much she resembles a china doll. People don't believe me when I tell them she's a year, and if they do believe me, they ask me if I am feeding her enough.
For the love of all things good, that is the most hurtful thing to say to someone in my position. It makes me cry to think of how terrible I feel every time I have to stop her from eating, when I have to say enough is enough, and pack it all away. I count every calorie she gets, to make sure she's gaining the perfect amount for her, to keep her healthy, to keep her mind and body growing. I try to increase her intake of lower calorie foods, and only give her tastes of the things that are calorie loaded. My heart is broken at every meal, and I just wish they could make this go away.
I was so upset at lunch yesterday, when she wouldn't stop crying, because she'd inhaled her lunch and was watching us eat. I told DH that I hate her disorder. I hate it. He just laughed at me, and told me not to be so serious.
If I don't take it seriously, we could lose control of this terrible beast. The hunger knows no bounds.
It is hard.