Want Lunch?

Recently, one of my mommy groups had baby tantrums as photo of the day. Although I almost always participate, this time I chose not to. Why? Because the only time Ellie is EVER upset, ever, is when we take away her dishes, and she doesn’t get to eat anymore.

It is really hard for me to ask for money, especially from friends, when I know they’re struggling. I feel so awkward doing it, but I know that if we raise enough money, we’ll be able to fund a cure, and the actual hard part of my life would become easier.

You know what the hardest part of all of this is? Having Ellie look at me, when she’s eaten all she’s allowed to eat. Her eyes well up with tears, and a painful look crosses her face, as she whimpers. She starts of quietly, tracking the dishes as they disappear into the sink. Maybe she will focus on a crumb, or a seed, and once she’s eaten that, she looks at us. If we’re still eating, she starts signing more, MORE! MORE! MORE! Getting increasingly more aggravated, irritated, angry. She bangs on her tray, and when being angry doesn’t work, she starts to cry the saddest, most heartbreaking, soul-crushing cry you’ve ever heard.

I would do anything to have that stop, to not have to say No. But, giving in to her, when she’s had enough, is only going to cause problems in the long run. So, meal in, and meal out, day in and day out, week after week, we say No.

“I am so sorry, sweet heart, it’s all gone. We’re finished.”

She cries, and I force myself to smile, to pick her up, to cuddle her. To show her she’s okay, and to distract her. Away from the food, she quickly springs back to her happy self, like nothing happened.

It’s so hard. So, I’m going to keep asking you for your money. Your change, your pennies, whatever you can spare, until the day they cure her hunger, until the day geneticists can say “Your child has PWS, but it’s curable!” When that day comes, I’ll take us all out to lunch.