The Charade of Normal

Up at 5:30 this morning.

It was freezing, about five degrees, I think.

Drove into the office, worked all day, then knocked off and had dinner with the kids.

When I got to my daughter’s, I sat in the chair and didn’t move for an hour and a half.

I just needed to.

When you work from home most days, an hour each way on the road takes more out of you than it should.

I had homemade ice cream that my daughter had made.

Illness is our normal now.

I don’t know what to do anymore.

She still won’t eat.

The NGT tube is still in.

Medication after medication has been tried, nine or ten by now. Even clozapine, usually reserved for treatment-resistant cases, didn’t have a proper chance to work because her body was too depleted to tolerate it.

What frustrates me most is that there has never felt like a clear path forward.

Every time something fails, it lands back with us to work out what next step to push for.

We are the ones asking the questions.

We are the ones chasing changes. We are the ones trying to keep a direction going when nothing feels stable.

In this last round, my daughter was the one who found the medication herself.

That stays with me.

Not because I expect every answer to come from clinicians without effort from us, but because it reinforces the feeling that there has never been a structured plan, just trial, adjustment, exhaustion.

Now I find myself thinking beyond medication altogether.

CBT. DBT. Something different from another pharmaceutical attempt layered on top of the last.

And then there is ECT.

It is not explained in depth.

It is not part of a clear discussion.

It is just placed at the edge of everything else.

Doctors raised it early on, I made it very clear in writing that it was not something we consented to or wanted pursued.

And yet here we are again, with a very sick child, desperate to be well thinking there is nothing else, as nothing else is offered.

What I cannot reconcile is how something like this is presented, not as a fully explained, carefully considered pathway at the moment she is most vulnerable and desperate to get well.

It leaves me with disbelief.

Because this is not theoretical. This is not abstract. This is a sick mother trying to survive.

Tonight, though, I am home.

The house is quiet.

There are no appointments, no decisions, no phone calls.

Just work tomorrow.

And I am holding onto that.

This small stretch of normality before everything shifts again.

Because experience tells me it will.