Both Sides of Goodbye

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. Because one of us will go first, and neither of us gets to choose the order. Only Allah knows the hour, and only He decides who among us returns to Him first. 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. Twenty-two years of 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.

So today, I'm looking at both sides.

If I Go First

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. And that's the fear underneath the fear: not that I'll die, but that everything I carry about her, silently, invisibly, in my hands and my instincts, dies with me if I don't find a way to pass it on.

So lately I've been starting to write it down. Not because I think I'm going anywhere soon, but because love, done right, plans past itself and because I believe I will be asked about this amanah, this trust Allah placed in my care, on the Day I stand before Him. A letter about her routines. A note about what makes her laugh, what unsettles her, what "fine" looks like on her versus what "something's wrong" looks like. It's unfinished. Some of it may always be unfinished, there are things I know in my body that I don't have words for yet. But I'm trying, and I make du'a that Allah completes what I cannot.

What I want, more than anything, is for whoever comes after me to know her, not just care for her, but know her. To understand that she is not the sum of her diagnoses. That she has preferences and moods and a whole interior life she's never once been able to describe out loud, and that it is worth the effort to learn her anyway. I ask Allah, if that day comes, to send her someone with a soft heart.

I remind myself often of the promise in Surah Al-Baqarah (2:286): that Allah never places on a soul a burden greater than it can bear. If He entrusted her to me, He also gave me exactly what I would need to carry her and if one day someone else must carry her instead, He will have prepared them too. She is an amanah, a trust, and the One who lent her to me does not abandon a trust.

If She Goes First

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 I've learned that naming a fear isn't the same as wishing for it and in our deen, remembering death is not despair. It 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. I don't dwell in it. I try, instead, to remind myself that she came from Allah and will return to Allah, and that whatever time is written for her here is already known and already good, even when I can't see how. But I'd be lying if I said the fear never crosses my mind, especially on the hard days, when her body seems to be working harder than usual just to stay steady.

What I've come to understand is that this grief and my love for her aren't in competition. They live in the same room, held together by sabr, not the passive kind, but the kind the Prophet ﷺ described, patience at the first strike of calamity, patience that keeps showing up. I can be fully present, fully hers, fully in this moment, feeding her, laughing with her, watching for her cues while also carrying the knowledge that this won't last forever. For anyone. But especially, more visibly, for us.

And when I let myself imagine what she leaves behind, it isn't small. There is a hadith, narrated by Aisha (RA), where the Prophet ﷺ explained that the pen of accountability is lifted from a few categories of people, including someone whose mind has not fully developed or is not sound, meaning she is not judged by the same standard the rest of us are. I hold onto that. In another hadith, a woman who was not of sound mind once approached the Prophet ﷺ wanting to speak with him; rather than turning her away, he patiently 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 standard I hope the world holds for her.

Shaykh Omar Suleiman, who has spoken often about disability in our communities, has taught that Allah and His angels are especially present wherever someone is unwell or living with a disability, so that caring for her is, in a real sense, time spent in that same presence, with reward attached to every ordinary day of it. He has described children like her as being counted among the people of Jannah, entering without the accounting the rest of us face, and able to intercede for their families on the Day of Judgment. Whether or not I fully grasp the wisdom in it, I choose to believe her difficult path here is not a punishment but a preparation for a home that will finally, fully see her.

The Space Between

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.

Loving her this fiercely, knowing that neither of us is guaranteed tomorrow, could be a reason to hold back. Instead, it's become the reason I don't. Allah promises in Surah Ash-Sharh that with every hardship comes ease, not after it, but alongside it, woven into the same days. I've come to believe our hardship and our ease have always been sitting side by side, in the same room, on the same ordinary afternoons. Every feed, every adjustment, every quiet moment with nothing remarkable happening at all, is not a moment I'm waiting through. It's 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. What I know is this: today, we are both still on the silent path, walking it together, trusting the One who lights it. And that is enough to hold onto for now.

There's a moment in Surah Yusuf that stays with me, after everything Prophet Yusuf (AS) went through, he turns to Allah not asking to be spared what remains of this life, but asking for something else entirely: to die in a state of full submission, joined with the righteous (Surah Yusuf, 12:101). 

"O Originator of the heavens and the earth! You are my Guardian in this world and the Hereafter. Allow me to die as one who submits and join me with the righteous." 

That is the same prayer I find myself making now, for both of us. Not a request for more time, but a request for what kind of ending it is. 

There is a du'a from the hadith that I return to now as well, for both of us:

اللَّهُمَّ اجْعَلْ خَيْرَ عُمُرِي آخِرَهُ، وَخَيْرَ عَمَلِي خَوَاتِمَهُ، وَخَيْرَ أَيَّامِي يَوْمَ أَلْقَاكَ

O Allah, make the best part of my life its very end, the best of my deeds my last ones, and the best of my days the day I meet You.

And alongside it, the shorter plea so many of us whisper without even realizing it's a sunnah:

اللَّهُمَّ إِنِّي أَعُوذُ بِكَ مِنْ سُوءِ الْخَاتِمَةِ

O Allah, I seek refuge in You from a bad ending.

I ask for husnul khatimah for her, that whenever her moment comes, it finds her in a state Allah is pleased with. And I ask it for myself, too, for whichever moment is mine. Not because I know what a "good ending" will look like for either of us, only that I trust the One being asked.

Ameen.

If you're a caregiver carrying a similar fear, know that you're not alone in it and that naming it doesn't make it more likely. It just makes it easier to carry, and easier to bring before Allah in du'a.

Stay Blessed, until we share light again. 

Nur/Muji's mum