Descriptions, reminiscences

Hello, hello

I know I don't post any pictures of myself or Maisie. There's a reason. I know Maisie's father is out there somewhere and I don't want to give him any way to track us down. There is no doubt in my mind that he is dangerous and he is the one who attacked us. But everyone wants to know what Maisie looks like, so I'll give you as descriptive a description as I can.

Maisie is rather small for her age. She weighs 23 pounds and stands 32 inches tall. To give you an idea of how much weight she's lost, at her physical in August for school she weighed 38 pounds. She was wonderfully short and chubby then, but now she's so sick and skinny.

She has dark, loosely curly hair and huge green eyes. Because her skin is very thin she often looks kind of bluish or greenish all the way around.

Does she look sick? Yes. Right now, she does. Oftentimes her limbs are flailing and flopping, or she's curled up in a heap. My little bag o' bones.

I came across a series of pictures of Maisie taken on her second birthday. She's running, tripping, down the stairs and through the hall and, in the last one, standing in front of a heap of presents with a look of such wonder and awe on her face. She looks so big, so strong, it's hard to believe the tiny, frail thing watching Finding Nemo in a stander is the same chubby little girl. I love her so much, fat and healthy or thin and sick, but the change in her these past months is incredible. I think I've been in denial of sorts about my little girl, about how ill she really is. I don't want to believe she could have mito or any other illness. In some ways it was easier to believe that all this that she struggles with is her father's fault. That in and of itself is terrible, but the idea that I could have had a part in giving her the faulty gene causing so much strife is unbearable.

She had a horrible night last night.

She was wailing for hours, she was so hungry.

She wore herself out with her tears and lay on the bed at my feet with tears streaming silently down her face, a look of such desperation and frustration that I cried with her.

She was literally starving but she was too tired to eat.

So she'd fall asleep only to wake up in tears again because her stomach was cramping.

I was alternating trying to give her sips of Pediasure and spoonfuls of mashed sweet potatoes and applesauce.

She would take a bite or a sip and proceed to struggle for ten minutes to get it down. The effort of coordinating her tongue and lips and teeth to chew and then swallow wore her out. The whole process would start over again. A hideous, brutal catch-22. This went on from 6:00 in the evening to almost 1:00 in the morning. That was all she ate that day.

This morning she is a different girl, in her stander with banana slices and cut up waffle. She's eating slowly, but she's eating. Some days, that's a miracle.