Fatima is two years old, perfectly intelligent, and alive because of a respirator, an oxygen tank, and a feeding tube that delivers food directly to her stomach. Fatima's condition stems from a serious spinal cord injury she suffered at birth due to an error by the obstetrician. The severity of her situation demands qualified care around the clock—something her family cannot provide. So Fatima now lives in a small residential community that welcomed her at the start of this year.
It is five in the morning. An alarm sounds: beep, beep, beep. This time it's the oxygen monitor. Fatima's airways are clogged with secretions, and she can't breathe properly. I need to suction her. I grab the catheter, pull on a sterile glove, switch on the suction machine, disconnect the tube from her respirator, and insert the catheter into her tracheal cannula. She looks up at me with those big eyes, as if to say: *Really? Again?* This is the fifth time I've suctioned her tonight. Tomorrow, over the course of a full day, I'll do the same procedure about a dozen times.
Not even thirty minutes pass before the alarm sounds again: the respirator is reading "maximum pressure." Air isn't flowing into her lungs properly. I reposition her. The alarm stops. I lie down on the small cot beside Fatima and pray for at least half an hour of sleep. Beep, beep, beep! No luck. Every time I change her position, the secretions shift and need to be suctioned again. Catheter, glove, cannula—the whole routine.
A thought creeps in: How does a mother survive this rhythm? Or even a gentler one, less exhausting but unending, day and night without break? Tomorrow, when my shift ends, I have two days off. A mother never clocks out. I chose this work—because I love it, because it gives my days meaning, because... a mother doesn't choose to have a child like this. She finds herself in it. She never steps away. She has no time off.
My colleagues will arrive soon to relieve me. I prepare a large pot of coffee and light the stove. Beep, beep, beep! I race upstairs and rush into Fatima's room. The clip holding the oxygen sensor on her finger has come loose. I fasten it back and return downstairs to watch the coffee.
Halfway down the stairs, another beep, beep, beep reaches me. I turn around and climb back up. Fatima's color is off, and the heart rate monitor shows a reading that's too low. It's one of the usual emergencies, but despite my training and experience, a chill runs down my spine. I disconnect the respirator tube and grab the ambu bag—that manual balloon that pushes air into the lungs. With one hand I press in a rapid rhythm while the other reaches for the oxygen dial and turns it to maximum. Gradually, Fatima's color returns and the monitor values normalize. I reconnect the respirator, lower the oxygen level, and sit beside her as she sleeps.
Meanwhile, the coffee has boiled over and flooded the stove. I hear the front door open—my colleagues are here to take over. Fatima is stable; we let her sleep. Around the table with a fresh cup of coffee, I brief them on the night, and they divide the tasks. That thought returns: a mother has no days off, no time away. So I find myself saying I can stay longer and help, especially since one of the newer staff isn't yet confident with everything that needs to be done.
And there is so much to do during the day. Personal hygiene, massage, breakfast—not to mention cleaning and preparing all the equipment that keeps her alive. Then we bring Fatima into the living room with the other children. Seated in her wheelchair, reconnected to the respirator, she begins her daily adventure: physical therapy, respiratory exercises, cartoons, communication training, play. Then lunch, diaper changes, bowel care, a bath at the end of the day, dinner. Everything punctuated by medication times and beeps that signal new needs.
And that's just the list for this one special child. But a house has so much more: laundry, ironing, shopping, attention to the other children, remembering you have a husband. How does a mother manage?
I live this life and keep these hours by choice, with a serenity born partly of naïveté, anchored in deep values and faith. Sometimes visitors who leave say to me: you're so dedicated.
But I don't feel dedicated. The truly brave ones—the truly courageous and great ones—are the parents who, quietly, day after day, repeat the same tasks out of love for their child. Those parents are my teachers.
Dany, 2002