Laia doesn’t like winter because winter is associated with cold and cold with being in the hospital, so if Laia looks out into the courtyard, she is wearing a woolen hat and a thick blanket.
Laia has several machines at home that help her breathe and help her cough, but she doesn’t need help to be happy. She laughs just by hearing a high-pitched sound, a birdsong or the “happy birthday”.
Her mother Pili, shares that sweet and sincere smile that comes easy when you understand what is and is not important.
Pili welcomes me generously, because when you walk for two, think for two,live for two, only generosity fits. If your daughter doesn’t walk, you become her legs. If your child does not speak, you make the claims. If he doesn´t eat, you become a kitchen, a spoon, a syringe, magical herbs, medicine woman, spectrum and strength; and if he doesn’t sleep, you become a lullaby.
She has just very little time to take these photos before going to work
outside the home, for a couple of hours, while Laia´s grandfather comes to stay with her. Upon returning from work, for Pili the task of caring continues, but “it is always better than when it is time to spend long
periods in the hospital”.
“Laia understands a lot of what happens, and we are the ones who have the inability to understand her at times. The most difficult thing is feeling that you can be wrong and not guess what you really want or need. What hurts the most is seeing her suffer.
On a social level, I don’t like being looked at with pity. There are people who withdraw because our reality produces rejection, as if this was going
to be contagious to them.
I like them to ask what Laia likes, to ask how to approach her. I like when people want to know her. The biggest helplessness of the system is the cuts in aid and the difficulties for our sons and daughters once they go from childhood to puberty. In adulthood they are not treated with the same dedication, sometimes they are seen as a lost cause. They finish school and there are not enough places in day centers… That hurts because you feel completely abandoned. ” Pili