“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.
All I can say is, this post freaked me out. More than the others where you talk (to differing degrees) about death. I have no idea why. It just freaked me out.
This is perfect — this description of listening. That’s what I do. All night long. While I sleep. I listen.
Yes…bittersweet post.
Going on 4 years of listening now. Thank God I didn’t get one of those video monitors! I would have never gotten any sleep, because I would have been watching instead of just listening.
I can listen with my eyes closed and so I continue to do so.
As the others have mentioned, bittersweet sums it up well.
I’m supposed to stop listening? Oops.
I check Monkey for seizures (or another stroke) a couple of times a night. Friends and family have told me I shouldn’t, but…
Going on 15 years of listening, she sleeps in my room with me. And we have a white noise machine going at full volume as she cannot sleep in silence. Which means….I listen over the noise of the ocean 🙂 How that happens I do not know, but I hear it all, so far…
Owen slept with me in my bed every night. Except when he was at his dad’s, where he slept in his own room in his own bed. That’s where he died, last October. It happened sometime in the early morning hours and he was discovered face down, a couple of hours later. SUDEP was the stated cause.
I live every moment now, as I did before he died, reminding myself I couldn’t be everywhere.
And I remember that night; I had had a really bad sleep.
My daughter sleeps propped with her head on my shoulder and my arm around her, because of the damn reflux. I am not consciously aware
of listening per se, but I’m automatically adjusting her positions and monitoring her fluctuating temperatures all night. In my “sleep” I guess.
One day, a seizure will take her from us, whether it be SUDEP or an accident when she’s more mobile. I know it, the family knows it. It’s the epileptic elephant in the room. So, my head is never more than 8 feet from Marissa at night. I know in my sleep if her breathing changes, if she’s seizing in any one of the myriad of types she has.
And how many nights spent sitting on the floor with my fingers woven in the bars of the crib? the nights before the diagnosis, when I knew something was wrong but never what exactly? How do you know that he’ll be okay til the morning when you don’t know what is wrong? Even now, knowing that his chances of dying at night aren’t statistically much greater than a non-epileptic child, I still listen in the night.
@Lesley: I just looked at your blog and would be interested in comparing
no-Rett-dx notes with you, but saw no contact info…
Sally writes a great blog about her daughter Maggie but doesn’t leave comments elsewhere (that I read). This recent post is compelling – about one of those ‘sleep’-disturbing occasions:
http://sfmaggie.blogspot.com/2011/06/no-rest-for-weary.html
Here’s another link from a mom who knows:
http://www.theredneckmommy.com/2011/07/04/please-live/
I, too, listen every second of every night. And then I get up two or three times to make sure the covers are still moving up and down with her breathing. Breathing is good, and I want to make sure it continues…
“I am continually putting her health, well-being, and life in the hands of others, and that is tough.”
Me too, and never ever without worrying and feeling guilty. I’ve done it so long now (my daughter is 16) that I can no longer imagine a life without fear and guilt.
Sometimes – most times – I am so tired, exhausted from this way of life, but at the same time, so grateful that I still have it.