Another Discussion About Death

Today I had a little heart to heart chat with one of Joel's doctors. It was a bit of a difficult talk, but I allowed her that liberty because in the past she has always been fabulous, warm, caring and supportive.

Still, it came up. That topic which I dread, the one where they feel their way around the issue of if I realize that Joel is dying. Can I just say how happy I will be to take Joel out of the hospital??!!??

(Yeah, it almost makes me laugh now. I can't really imagine that anyone who read this blog would wonder if I am in denial, at least, more denial than is normal. It is just totally so normal and unchangeable to sort of be in denial that this is the very day that your loved one will die, no? Don't we all want to believe it will a least not happen until tomorrow? It is not denial that death is coming. It is just so hard to believe it is going to happen today.)

I should be used to it by now, but it always takes me aback when I get that question, though it may be put gently or bluntly, depending on the personality issuing it. I live with Joel's death so much, I sort of feel it is etched on my forehead. Can't you see that I know Joel is dying??

(by the way, my apologies, but this blog is really for me. I just gotta get this out. I'm not sure it is very interesting to anyone else. Certainly, it is going to be very emotional and ramble-y. Sometimes when I write I got something to say TO YOU. Sometimes I just have to say something FOR ME. This is one of those blogs, which means I don't think it's going to be one of my "better" ones. This is not going to be a "lobster" sort of blog. It is more along the lines of slightly scorched canned tomato soup. You don't have to "eat" it if you don't want to. :) )

So we were discussing the CPAP and the question came up. Just making sure I knew that the CPAP wasn't going to cure Joel, of course. Of course. Again, it takes me aback that anyone could imagine I think that sort of thing?? Seriously people, do I have "WILLFULLY THICK-HEADED" tattooed on my forehead or something? Read my blog. I'm the person asking about what "death day" was like for other families cause I see ours approaching...

And that led to another discussion, though I no longer can remember the exact ins and outs of it. I just remember it led to the doctor saying that she thought sometimes doctors were just worried that we (the parents of dying children) might end up only prolonging the suffering of our children. They wanted to be sure we didn't make choices that prolonged suffering, instead of preventing it.

And as time goes on, I can see that the doctors we work with, particularly those that don't know us well, may be worried about this. I can sense that undercurrent when I ask them about certain medical alternatives. As Joel gets older, and his disease progresses, I can sense this sort of feeling more and more. I sort of understand it. But it does also sort of make my job harder. It is hard when you feel people might be sort of questioning your judgement. Because it is hard to make these judgements to begin with, to try and plan and choose options with a disease that is so unpredictable. Believe me, I can be the queen of second guessing, and situations like this are just rife with it.

The really funny thing, the thing that most of them realize not, is that Joel's quality of life if measured by what he is capable of, yes, it has gone down. But if measured by his happiness, it has gone up. On the whole by so very much.

I don't remember Joel smiling more than once or twice for the first five months of his life. He did have a brief happy period, one where he developed a bit and was playful and smiling. It lasted about three months (from 5 to 8 months). But for most of his first year, he really wasn't a very happy child. He was a very poor sleeper. He had many irritable periods, and he did a lot of crying. A lot of crying. We both did. It was hard to believe his life was worth living, at times.

But the first year things really seemed more hopeful regarding his development, and his physical potential. I really thought he'd learn to sit up. Joel was actually diagnosed as being on the milder end of the spectrum. For the first 8 months, I thought he'd actually fed himself one day. I have pictures of when I was trying him on baby food. The first year was much more promising, regarding his physical well-being.

Yet the first five months of his life were miserable, both for him and for me. And don't get me started on what last August was like.

Well, if I am honest with myself, his real happiness didn't start until about October or November. Just after I had sort of given up hope that he'd ever be smiley or playful again.

And it is still going strong. November, December, January, February, March, April, May, June. Eight of the happiest months of his life. Yet the last four he has had the most serious problems physically.

Which makes things hard all around. Having finally achieved so much happiness and contentment for him, I am very reluctant to let it go. I will fight to keep it going, as long as I can, with pretty much tooth and claw. It is precious.

So while doctors get more and more concerned that we might force discomfort on Joel, that we might prolong his suffering because we just can't let go, ironic, isn't it, that I feel that we have him in a place of so much contentment and happiness? Now is exactly the time I am the most committed to fight for things, because now Joel is so smiley and playful.

How much is one happy day with a loved one worth? What would you be willing to pay to keep that last day? Those last laughs or smiles? There is little I wouldn't give up for one more day like that. I'm just being honest. Even though I know I'll see Joel again, and even though I know he'll go to a better place, I'd still pay a pretty high price for just the joy of being together, happy and contented, one more day.

Modern medicine is utterly fantastic. It can so do much for us. If Joel was born a hundred year ago, I know he would not have lived much past 5 months. So I am absolutely grateful for what has been given to me.

Still, I feel a pang of nostalgia for the old fashioned doctor that did house calls. The one that really knew you and your family. The one that knew you so well he didn't have to ask if you knew your son was dying. He saw you enough he could really see the quality of life of his patient, or when all that was left was prolonging suffering.

The closest thing we have to this is our palliative care and symptom management team. Mercifully, they spend very little time asking me if I know Joel is dying, or if I realize that whatever new treatment options come up will not cure him. Most of the time, I don't even think they are worried that I am needlessly prolonging Joel's suffering. At least, I hope they don't, they don't hint that, anyway.

Because I still believe we can have a few months, or weeks, or at least days, of happiness. One of the other things the doctor asked me was how I was preparing for Joel's death. Which also took me aback, mostly because the death I have really been "preparing" for the last few weeks is my dad's. And I told her so, which caused her to "take back" her question, as she said I obviously had enough other things to think about first. Yeah. Maybe. Well, she didn't know about my dad.

How do you prepare for death? Is that the purpose of this blog? Is that why I talk to other people about their experience? Is it when, every single morning that I wake up and hear Joel's breathing I say "Thank you God. Yesterday was not that day. This is a good morning, for my son is alive." Is that preparing for death? I don't know. Maybe that is in there, and that would perhaps be a good thing. But that is all I have that might be death preparation, and I don't really do it to prepare for death. I do it to prepare for another day of life. Because I'm going to go on living (God willing). And this is the only way I know how to do it.