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The Question

The Question

 A few weeks ago, I had my 5th bout of diverticulitis in 3 years, and this time, went to the emergency room, as it had been only 3 weeks since the last bout (and only about a week since finishing antibiotics for that bout).  To my surprise, I wound up being admitted.  I’ve never spent a night in a hospital for my own illness except for being born and having my three kids.  It was eye-opening!  I don’t know if any other mother of a child with special needs has had the silly fantasy I’ve had, of a couple days rest in a hospital bed, guilt-free because you don’t WANT to be there, but HAVE to be there.  At some of the toughest moments of parenting, I’ve thought about how I could lay there, get food delivered to my bed, read, relax and not feel like I was being a bad mother being away from Janey.  Well, as I imagine most anyone who has actually spent sick time in a hospital knows, that was a pretty deluded fantasy.  I was in a double room, slept not at all due to a roommate who was having a lot of night issues which involved pain and screaming and yelling at nurses.  I couldn’t eat at all, due to my illness. I didn’t read a bit, due to being anxious and also having a coffee withdrawal migraine that just about did me, and I felt guilty being away even under the circumstances.  I stayed two nights, and was very happy to come home when I did, on heavy antibiotics and with an appointment to discuss possible surgery for my diagnosis, smoldering diverticulitis, a rare form of diverticulitis that never really goes away despite treatment, except if you just cut out the sections that have it.

I’m okay for now, but what looking  back hits me the hardest about the whole experience is the question I was asked by a doctor as I was being admitted.  I should have seen it coming—I know it’s something they ask, but I didn’t.  After going over my medical history, medications, stuff like, the doctor said “Now I’m going to ask you something else.  If something unforeseen and tragic were to happen, and you were dying, would you want everything done to keep you alive?”

I was thrown for a loop for a minute.  I just didn’t know what to say.  After thinking a bit, I started on a long, rambling speech about how of course if I were brain dead and had no hope of conscious life again, or if I were going to need life support forever….those kind of provisos.  But she said (and I don’t think this lady had the greatest bedside manner) “We are asking it more like a yes or no question”.  And so I said, before I thought about it more, “Yes!  Revive me!  I have a 16 year old daughter with severe autism and I have to live forever!”  She answered “That sounds very reasonable”, probably taken aback by my lack of basic knowledge of the inevitability of death.

And of course, in the moment, I meant it.  I’ve thought, as we all have, about how someday my children will hopefully outlive me.  But to think of it concretely, as a question like that, not that it was probably going to come up from that hospital visit, but thinking of it as something that COULD happen—wow.  It’s a scary, scary thought.  

It was interesting how Janey reacted to my being in the hospital.  I’ve gone away for close to a week at a time before, to visit my parents in Maine, and I plan to go again this June, but those times, I prepared Janey well in advance.  I talked to her a lot about when I would be leaving and when I would come back.  This time, she came home from school on a Monday and I wasn’t there.  She knew I was in the hospital, and I think she probably related that to when she herself was in the hospital, for something far more serious.  I think she was scared, although she really couldn’t express that.  When I got home, she clung to me for a few days—something she almost never does.  I talked to her about what happened, reassured her I felt better, told her I didn’t think I’d have to go back to the hospital soon but that if I did, I’d be home again after that soon—all that.  But with Janey, we never really know what she understands.  

Lately, we’ve noticed Janey is quicker to burst into tears over things.  Sometimes we have no idea what is up, but often, it’s when she overhears us talking about anything even slightly upsetting.  I don’t know if she reads our tones or understands or words or a combination of both, but she certainly is affected by what is said around her more and more.  She gets over this tears pretty quickly, and that kind of emotional up and downs is certainly something not foreign to any teenage girl, but unlike most of those girls, it’s very hard for her to understand degrees of seriousness, to be reassured by reason and facts.  She lives in the present.  Even telling her we’ll give her a car ride in a few hours or that school will be back after a vacation is more than I think she really can grasp.  We explain and reassure anyway, because we really don’t know exactly what she does get, but it breaks my heart to think of her scared by her lack of understanding.

Before I was admitted, while I was in the emergency room, there was a woman a few beds down.  I never saw her, as there were curtains up, but I certainly heard her.  She screamed almost non-stop, for four hours.  At first I wasn’t sure she was verbal, but then at a few points she stopped to ask for specific painkillers, and from the nurse’s not quiet talk outside my curtain, I gathered she was seeking drugs.  But there was more going on than that, and I heard a nurse talking to a supervisor at her group home.  I don’t know her story, of course, but of course, I thought of Janey.  I thought of her in pain, being brought to a hospital unable to communicate.  There didn’t seem to be a lot of sympathy or caring for that woman, which I guess I can get—her screaming was pretty loud, and she was doing other things like making herself throw up and lashing out.  But still—I drew parallels, ones that might not be there, to Janey, to those who for so many reasons are not in the mainstream of society, who can’t advocate effectively for themselves, who will always be dependent on others.  And that certainly added to the kick in the heart that I felt a few hours later when asked about my own mortality.  I have to live forever.  Janey, I wish I could.

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