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Someone asks me if I want tea or coffee.
I have no answer.
Not a preference I’m weighing up. Not a polite hesitation. My mind is entirely blank.
Somewhere behind it a voice is saying: For goodness sake, just pick one. It doesn’t matter. And the chance of someone else making you a hot drink is not something to pass up.
But nope.
I cannot decide.
“Just make me either. But don’t make me pick, please.”
That is the moment I would point to, if anyone asked me what this actually costs.
Not the hospital corridors. Not the nights. A kind person in a kitchen, offering me something, and me unable to answer.
Sometimes, there is no definitive end.
Just the gaps between admissions getting longer. A life that adapts around the new normal, the changes and differences becoming part of the shape of your life.
They are doing well. The admissions get further apart. Eventually discharge is discussed.
And you nod.
But it is hard to trust when all of that was said before, and then things continued to get worse. Once that has happened, reassurance stops being information. It becomes a thing people say.
So you accept the discharge. You say thank you. But some part of you doesn’t put anything down.
By now, the exhaustion is just part of who you are—embedded in your bones and your body in a way you hardly notice.
You only see it sideways, in odd moments.
Others say, “It’s so great, she’s doing so well now.”
And it lands on numbness.
It is great. It is true.
But can I trust it?
And doing well also seems to mean you don’t need help anymore. It is said with relief—the relief of people who have felt bad that they couldn’t do more, and who can now stop feeling bad.
The situation has resolved. Everyone can exhale.
But I don’t have that luxury.
Life continues at exactly the same relentless pace. When a child has a difference, doesn’t sleep, doesn’t stop, and doesn’t come with the risk assessment other people’s children seem to arrive with, better health doesn’t necessarily mean rest.
It means the vigilance changes shape.
It doesn’t stop.
The support withdraws precisely when the watch continues.
By now, I start to notice I’m ill more often than I’m not.
Any attempt to regain fitness—a run, a class, something that used to be mine—results in me being stopped in my tracks about three days later, almost exactly.
Something that feels like flu. Sometimes shingles. Sometimes just collapse.
But I don’t get to stop watching. I don’t get to stop caring for small people who need me. So the information from my body gets noted and overruled, because stopping is not an option.
Eventually comes the realisation that you can’t juggle it all—the career you love, the kids you love, the expectations the world has of you—and survive.
So you have to drop the things you can.
Not the kids.
Never the kids. Never the watch.
So it is the job. The career I loved and was good at. Then the income that came with it. Then the tidy house. Then the fitness, the hobbies, the adventures, the friendships that needed maintaining, the outside life that was the last little bit of me that remained.
You don’t really decide this. You arrive at it, one dropped thing at a time.
And then one day you look up and realise that the only thing left standing is the watch.
And then you find out what you are called now.
A word currently being carried through the newspapers as a cost. A drain. Something the country can’t afford.
But here is the arithmetic nobody does out loud.
If I gave up the part I actually do—the 24 hours a day, seven days a week watch—someone else would have to be paid to do it.
It would cost a fortune.
And I don’t believe for one moment it would be done as well. Not because other people wouldn’t care, but because these are my children. I am fully invested in a way no shift pattern can replicate.
They are not a job. They are not a shift.
They are my everything.
That is precisely why I could give up everything else. Including stature and standing. Including being someone whose professional opinion was sought, who had a title, who was introduced by what she did rather than what she manages.
I gave that up to care for them and hold the watch.
And the holding of it is described, in the country I live in, as a burden on the public purse.
So how does it feel to stop?
I don’t know.
Because I have never done it.
The watch continues until one of us dies, perhaps.
Which means the task was never really endurance. Endurance assumes an end you are holding out for.
There isn’t one that I can see.
Somehow, I need to work out how to make a life inside this that is sustainable, and joyful, and worth living—for all of us, not just for them.
And of course I do.
Because whilst it is exhausting and relentless, it is also filled with love like I have never known before. Learning I never thought I would be given. Joy that arrives without warning and makes my whole heart feel full.
You learn to love a life that is different, and to be grateful that it is yours.
Because so many people have a watch that does end, and the heartbreak and weight of death is one I am grateful has not been mine.
So far.
I’m not writing this because I want anyone to fix it.
Most of it isn’t fixable, and I wouldn’t hand over the parts that are mine.
I’m writing it because of the gap.
On one side, a family whose life has quietly reorganised itself around never quite standing down. A parent who has dismantled almost everything she was in order to keep going.
On the other, people who genuinely care about us, who have been told the crisis is over, and who now feel free to stop asking.
Nobody is being unkind. Everybody is doing their best with the information they have.
The information isn’t exactly wrong.
It is incomplete.
So if you know a family like this—if the treatment has finished, or the admissions have stretched out, or the child is doing well—know the watch may have changed shape. But it has almost certainly not ended.
You don’t need to say anything clever.
Just keep asking.
And when you do, make her the drink.
Don’t make her choose.
~
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