Bismillah.
It happens in the middle of something ordinary. I'm adjusting the pillow behind her back, checking the angle of her wheelchair, listening to the small hum of the feeding pump, and then, uninvited, the thought arrives:
What happens when one of us is gone?
Not if. When. One of us will go first, and neither of us gets to choose the order. Only Allah knows the hour. That certainty, that our lives and our deaths belong entirely to Him, is the only thing that lets me hold this thought without it breaking me.
I used to push the thought away as fast as it came. Now I let it sit with me for a moment, whisper inna lillahi wa inna ilayhi raji'un, to Allah we belong, and to Him we return, and go back to what I was doing. Loving her this closely has taught me that some fears don't need to be defeated. They need to be surrendered, gently, to the One who gave her to me in the first place.
If you're a caregiver carrying a similar fear, you're not alone in it. Naming it doesn't make it more likely. It makes it easier to carry, and easier to bring to Allah in du'a.
So today, I'm looking at both sides.
The fear isn't really about dying. It's about being known.
I am the keeper of a thousand details that live nowhere else. The exact angle her head tilts before a seizure starts. The difference between her stillness when she's content and her stillness when something is wrong. How long to wait after she makes that particular sound before I know it means discomfort and not just settling in. Nobody trained me for this. I learned it the way you learn a person, slowly, by paying attention, over years, and I believe Allah placed that patience in me for her sake.
That knowledge is not written down anywhere close to completely. But I've learned that it doesn't live only in me. My daughters have carried her since she was a baby. They tube feed her. My eldest knows how to put her nasogastric tube back when it comes out. They change her, wipe her dribble, and do therapy with her, and they learned it the way I did, by paying attention. What I carry is a different layer: the things I know in my body and don't have words for yet. That's the fear underneath the fear, that those quietest parts will go with me unless I find a way to pass them on. Love, she has never lacked.
So lately I've been writing it down. I don't think I'm going anywhere soon. Love, done right, plans past itself, and I believe I will be asked about this amanah, this trust Allah placed in my care. A letter about her routines. A note about what makes her laugh, what unsettles her, what "fine" looks like on her and what "something's wrong" looks like. It's unfinished, and some of it may always be, because there are things I know in my body that I don't have words for yet. I make du'a that Allah completes what I cannot.
What I want, more than anything, is for her to stay surrounded by people who know her, and I'm grateful that she already is. There was a time I thought about respite care, and my daughters and my husband were all against it, because no one else would know how to care for her. When my husband and I go away, her sisters take turns. I know she can count on them, and their love for her has never been in question. She is not the sum of her diagnoses. She has preferences and moods and a whole interior life she has never been able to describe out loud, and her sisters have made the effort to learn it. I ask Allah to keep her surrounded by people with soft hearts, and to keep my daughters' hearts as soft as they are now.
I remind myself often of Surah Al-Baqarah (2:286): Allah never places on a soul a burden greater than it can bear. If He entrusted her to me, He gave me what I would need to carry her, and if her sisters must carry her more fully one day, He will have prepared them too. She is an amanah, and the One who lent her to me does not abandon a trust.
This is the harder one to write. It's the fear that doesn't get spoken about in caregiver circles nearly as often, maybe because it feels disloyal to even think it. But naming a fear isn't the same as wishing for it, and in our deen, remembering death is a form of wisdom.
I live, in some quiet way, with breathless grief. It sits beside the daily routine, the feeds, the medications, the seizure watches, like a second shadow. On the hard days, when her body seems to be working harder than usual just to stay steady, it comes closer.
When the feeding machine finishes, it beeps. It's a small, flat sound, and I've heard it so many times that my body is already moving before my mind catches up. I think about the day it has nothing to tell me.
Every night I say good night to her and ask her to make du'a for me. She has never answered in words, and I have never needed her to. What I would miss is the asking, and the room where I do it.
And the shoes. Before we go out, I put her socks on, then her shoes, getting her ready to go and explore life. I think about the day there's no one to put them on.
Then I turn to what I know. This grief and my love for her aren't in competition. They live in the same room, held together by sabr, which is not passivity. It is the patience the Prophet ﷺ described, at the first strike of calamity, the patience that keeps showing up. I can be fully present, feeding her, laughing with her, watching for her cues, while carrying the knowledge that this won't last forever. For anyone. But more visibly for us.
I take comfort in what our tradition says about those whom the pen does not hold to account. In a hadith narrated by Aisha (RA), the Prophet ﷺ listed those from whom the pen is lifted, including the one whose reason is impaired. This is the language of the law, not the language of love. I know my daughter's interior life, and I don't use that category as a description of her. I use it to understand the mercy Allah has already built into her situation.
In another hadith, a woman who was not of sound mind came wanting to speak with the Prophet ﷺ. Rather than turning her away, he stood aside with her on the road until she had said what she needed to say. That is the standard I try to hold myself to, and the one I hope the world holds for her.
I have also found comfort in words from Shaykh Omar Suleiman, speaking to parents of children and adults with disabilities. He reminds them that Allah sees their sacrifice, and that the reward is being written every single day. Of those with a more serious disability, he says the pen has been lifted from them, and that Allah has given the parent "a person of Jannah to care for." Then he asks, with a perhaps, whether that person might intercede for them on the Day of Judgement. (article, talk)
I hold this as a source of hope. I choose to believe that Muji's difficult path here is a preparation for a home that will finally, fully see her.
There's a moment in Surah Yusuf that stays with me. After everything Prophet Yusuf (AS) went through, at the height of what Allah had given him, he doesn't ask for more of it. He asks for something else:
"My Lord, You have given me [something] of sovereignty and taught me of the interpretation of dreams. Creator of the heavens and earth, You are my protector in this world and the Hereafter. Cause me to die a Muslim and join me with the righteous." (Surah Yusuf 12:101, Saheeh International)
That is the prayer I find myself making now, for both of us. It's a request for what kind of ending it is, not for more time.
There is also a du'a that Abu Bakr al-Siddiq (RA) is reported to have made, recorded in the Musannaf of Ibn Abi Shayba (Book 22, no. 28932):
اللَّهُمَّ اجْعَلْ خَيْرَ عُمْرِي أَخِيرَهُ، وَخَيْرَ عَمَلِي خَوَاتِمَهُ، وَخَيْرَ أَيَّامِي يَوْمَ أَلْقَاكَ O Allah, make the best part of my life its end, the best of my deeds my last ones, and the best of my days the day I meet You.
I make this one my own. And in my own words: I ask Allah to protect me from a bad ending, and to grant the same mercy to Muji, husnul khatimah for her, whenever her moment comes, in a state He is pleased with. And for me too, whichever moment is mine. Ameen.
Here is what's true today: neither of these deaths has happened. She is here. I am here. The pump is humming, her head is resting where I placed it, and somewhere outside a car door slams and she turns her eyes just slightly toward the sound.
Knowing that neither of us is guaranteed tomorrow could be a reason to hold back. It has become the reason I don't. Allah promises in Surah Ash-Sharh that with hardship comes ease, woven into the same days. Our hardship and our ease have been sitting side by side the whole time, in the same room, on the same ordinary afternoons. Every feed, every adjustment, every quiet moment with nothing remarkable in it is a moment Allah gave us, and I try to receive it as exactly that.
I don't know which of us goes first. I've stopped needing to know. Today we are both still on the silent path, walking it together, trusting the One who lights it. That is enough to hold onto for now.
Carry a little light today. Until we share light again.
Nur, Muji's mum
Related reading: [A Letter to My Daughter: Caregiving, Faith & Letting Go], [How a Muslim mother of a child with disabilities struggles through grief?], [Why I No Longer Pretend Caregiving Is Beautiful Every Day]
Comments