“The first duty of love is to listen.” ~Paul Tillich

So when did you stop listening all night?

As you may remember, I have been traveling. Nothing special happened, other than this of course.

A somewhat new nanny stayed over with Pearlsky one of the nights. She has worked with the disabled before, but as I am known to point out, there is a real difference between those like Pearlsky (i.e., “severely” disabled, i.e., non-mobile, non-verbal, seizures, etc.) and those not so severely disabled. She has worked with the latter. Somehow I know I am going to get in trouble for that distinction, but whatever.

If Pearlsky dies from “natural” causes, the odds are it will be during the night. We all know this to be true. Seizure, aspiration, etc. The best we can hope to do is listen, the one sense that in humans stays “on” during sleep. Maybe, just maybe, the sound will be different, un-natural, and we will have the presence of mind to deal with whatever the issue is.

The nanny did not sleep all night, she was just listening. Not at my insistence, mind you, but then, maybe I should have.

There are echos of this in this post on Claire’s blog, Life With a Severely Disabled Child, especially in the comments.

I am continually aware that although one can say Pearlsky is “healthy” (all vital organs work, [although you can argue her brain is a bit off], she does not get sick easily, her immune system is strong, etc.) she is at a much greater risk of dying than most people.

I am continually putting her health, well-being, and life in the hands of others, and that is tough. The school nurses are an example, those who refuse to give her the only medicine that keeps her alive! I can’t bring myself to send her out to a respite facility for a weekend, how can I do that?

And sleeping? Yes, I listen. Still. Every night, all 6820 of them. I find myself listening when I am far away, in a hotel room, waking up worried that it is quiet and I have not heard anything … until I remember where I am. Then I lie awake, uncomfortable with not knowing.

So when did you stop listening all night?

I will, when one of us is dead.

Unless she goes first. I’ll be listening, even after that.

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