Hi, I’m the little one in the picture who is laying in the big “donut”. My Grandma, is the big one in the picture who’s laying in the little “donut”. My Grandma has ME/CFS. She’s like me; she lays around a lot. She doesn’t have a crib, and doesn’t like to lay on blankets on the floor, so she lays on her bed or on the sofa.
When Grandma’s on the sofa, she holds me with lots of pillows supporting her arms, so we can play. We have long conversations. I like to talk, and Grandma does too. My eyes, she tells me, are the prettiest blue she has ever seen. I don’t know my colors yet, all I know is that her eyes smile at me and I like to smile back. She gives me lots of kisses (too many, but don’t tell her I said so).
I wish my Grandma could hold me longer, but her arms get weak fast and she has to hand me over to someone else. I also wish my Grandma could sing to me. If Grandma sings, her muscles that help her breathe get very weak, which means it gets really hard for her to breathe. Because Grandma likes to talk a lot and shhhh-don’t tell anyone, she sang to me really softly, she had a “breathing attack”. Everyone in the the house got scared. I guess breathings a pretty important thing to be able to do.
My aunt sings to me. She knows lots of songs that Grandma used to sing to her. When Grandma was a teacher, she sang and played the guitar with the kids in her class almost everyday…this means she knows lots and lots and lots of kids songs, the one’s she tells me she wishes she could teach me. I want her to play the guitar and sing the “jump, jump, song”. My dad and aunts say it was their favorite, because when she played it, they got to jump on her bed. I want to do that when I can jump.
Please help my Grandma sing and play guitar again. She tells me its ME/CFS Awareness month and since I think I can talk, that I can spread the word that all the people in the world who have ME/CFS, the kids, the teenagers, the grown-ups, the parents, the grandparents, need your help so they can get better. If you visit SolveCFS, you can make a donation that will help, or you can read about what Grandma has…that helps too. Love, ”the little one in the big “donut”.”
