In May 2020, I have met Smadar Danan for the first time. She asked me gently if I could photograph her kid who is being kept alive by a respirator since he was born.
She knew their time together is on borrowed time, and she asked for herself not to forget a thing about their daily routine, or any detail from her son's life, Or.
One Saturday, early in the morning, I went into Or's bedroom. On a tall bed that was built exactly for their needs, I have met her beloved boy. Tender light touched softly his face and I have waited for him to open his eyes.
On February 14th 2022 Or passed away and he was nearly 15 years old.
Two years ago, after I met Smadar and Or for the first time, I have dedicated Smadar few words, which is now feels stronger than ever:
She is a former member of a kibbutz is Israel. She's 51 years old and rides her extreame bike tens of miles a week.
She says she's a fixed person, like living in a box.
She is a mother of Or. She has brave dreams and almost impossible heart desires. To freeze time. Distill inside a capsule scents of her child, which will stay with her forever.
The body odor of her 13-year-old boy.
The vanilla scent of his food, which reminds her so much of her own childhood every time she opens his food bag. It's called a "Kangaroo bag."
She wraps him in a towel and for her, he will always be her baby.
Uncertainty about when the moment will come, that she will have to say goodbye to him, tears her to pieces.
She lives in a box that is 4 walls of their house, where they are protected and preserve every day and every moment their memories together.
Smadar says that Or is a child who lives out of love.
I say that Smadar is a woman full of power, beauty and strength, and I wish she would just see and remember that she is not just a mother of Or, because inside of her there is much greater light and the day will come and she will shine out with it.