You’re five now and you can help me with Lisa. Mommy made me take care of her since I was five, so now it’s your turn to help. I’m six so I’m going to have to go to big girl school soon.
They can’t fix Lisa’s eye until she’s older, like nine. Then maybe the doctors can make her see better. I know why. It’s too bulgy. And she already has one gone. They want to save the left one, later. The light hurts her. She screams. You know; she has to. That’s why we keep the shades down.
Don’t open the closet door that blocks the light from her Daytime Nest. Keep the towel scooted up to the bottom of the door and pretend the light might get under it like water, so do it right. If you want to go in there to give her carrot sticks or cheerios in a baggie, knock first so she can stick her head in a corner.
If we go out to the car, like when Mommy takes us to the aunts’ house, use the black umbrella over her and wrap her in a big blanket, too, but don’t let her get too hot. Then let her get in first, down on the floor of the backseat and put the blanket back over her head. We’ll get in after her and keep our feet up. The big kids get the front seat. Keep your feet off her; she’s not a footstool.
She can’t talk because she can’t go to school even though she’s seven, because she’s special in too many ways; you have to figure out what she wants. She’ll do the bathroom by herself and Mommy usually gets our dinner ready before she leaves in the morning, so that part is okay.
Sometimes she gets lost in the house. And sometimes she just gets scared or excited. Those screams are different and you’ll figure them out. Her eye patch doesn’t block enough light. You’ve heard that kind of scream.
Go into the Nest sometimes when she’s not there and try to imagine what it’s like to live in the dark all the time. Squint your eyes shut tight and even stick your head in a bag. Pretend your eye hurts and screaming doesn’t even help.
Turn on the bathroom light with the three switches. Stare at the bulbs until your eyes hurt. Imagine you could never see anything else unless someone holds a hand over your eye for you. That’s your job to do for her.
Turn out all the lights at night when Mommy’s at church and Daddy has to work late with the boys and go outside when there’s hardly any moon and lay on your back on the lawn with her. She’ll swish her fingers back and forth in the cool, long grass and you will, too. The stars are small enough chips of light that they don’t hurt her much and she still likes them. Maybe she’ll feel your face and find your mouth and bunch it up in her fingers. Maybe she’ll find you eyes and touch each one softly with just the tip of her pointer finger like touching Nancy’s pink new baby. And maybe she’ll take your nose between her thumb and finger and say: “shtook, shtook, shtook” and squeeze just enough to say “I love you.”
Mommy made me do her baths, too, but you don’t have to; I’ll still do those. I’m six and I’m used to it. She gets cold easy when she’s wet and doesn’t have any clothes on and then she gets scared and might slip, so I’ll just do it.
And keep her in the bedroom when Daddy gets home or he might yell at her and then at you, like when she runs into things.
And here’s probably the most important thing: always know where her Santa Bear is, the one that plays seven songs when you squeeze his paw. She needs that bear to sleep or if she gets scared or goes anywhere new or to the hospital especially.
She knows all his songs. She can sing along with all of them. Try this even: sing “Rudolph the Red Nose …” and wait. She’ll do: “Bah bah. Bahbah bahbah bah bah Nose.” She can say ‘nose.’
Don’t worry. I’ll help you a lot.