More affirmation

I really wasn't going to write another blog. My respite worker is here, managing the boys, and I was fully intending to get something accomplished today, that something being things like laundry and cleaning, not sitting and writing blogs.

But I just have to get this off of my chest. I was cleaning the kitchen with more and more vigor as the thoughts just wouldn't rest in my mind. I just had to get it out.

So, this blog is linked to the previous one, but it springs up from two separate events. Two things that sent a cold breath up my spine, that left me feeling a bit seasick... or perhaps heartsick says it better...

Like my husband, I studied quite a bit about the ancient Greeks and Romans in university, though he was interested in conquest and strategy and military might, and I was more interested in the social side of things. Both civilizations are very interesting studies, but I certainly wouldn't have wanted to live in them.

For one thing, if Joel had been born in ancient Rome, he most likely would have been taken out of the city and left out on the top of a hill, because that is what the Romans often did with children that were unwanted for any reason, but especially if they were sick or "defective" in some way.

That is pretty horrible, and I can't think about it with my heart too much because the picture it leaves me with is as hideous as a Gorgon. You might think it is because the Romans were "less evolved", that somehow they just were not as civilized as we are. Which is, ironically, exactly what the Romans thought of most other civilizations. But if you read some of the things they wrote, and learn about how advanced they really were, I think you'd see they might be more like us than we would like to admit.

Not that we leave wee babes out on hills, but...

There was a story in the news, way back months ago, about a two tiny little baby girls. One had a defect in her heart and was going to die without a heart transplant. One had a genetic defect called "Joubert's Syndrome" and a part of her brain that regulated breathing was missing. It was a very serious defect, and children with the syndrome are quite severely mentally disabled, if they survive past infancy. But some, miraculously, do. Because the mind of a baby is remarkably plastic, and sometimes it is possible for one of these children's brains to have another part actually "take over" the responsibility of breathing. And when that happens, these children may be able to learn or develop, though always disabled.

You may already know this story, you may have heard about it. It just so happens that both little babies were in the same hospital. And the doctors told the parents of the baby with Joubert's Syndrome about the baby that needed a heart. And they all decided that the best thing to do was turn off the ventilator when the baby went to sleep (because that is when she needed it) and when she passed away they would have things all prepped to give the other little baby her heart. A huge wrench was thrown into the plans, though, when the little girl with Joubert's did not stop breathing. She just went to sleep and kept on breathing all on her own.

Now, I am NOT going to say that those doctors were evil human beings or criticize the parents in any way. But I do have to say that it really chilled me, every time I thought about it. Especially because I got the sense that the doctors were not pleasantly surprised that the little girl had managed this amazing feat of breathing on her own! But rather that they were disappointed that a perfectly good heart had slipped their hands...

Of course, I wanted that little baby, that perfect little girl with a bad heart, to get a new heart. I can't blame them for feeling the same way. What strikes me as so wrong is that they felt that since the chances were so great that the other little girl wouldn't live, it was ok to take from her what few days she might have left, to give them to another child.

And I just couldn't help but feel that the fact that she was severely mental disabled played a part in that. I mean, I have NEVER heard of a doctor telling the mother of a child diagnosed with a brain tumour that chances were not good for their child. So wouldn't it be better, rather than trying to treat this tumour against the odds, to let the child die so that the organs could be given to other children.

But then again, maybe that isn't as crazy as it sounds to me, after all. Because the second thing I have to share is about the doctor who first spoke to my dad when he came in with his leukemia. And this doctor was strongly in favour of my dad signing the papers for palliative care.

Of course, the odds were not in my dad's favor. They still are not, though they are better now that he has responded so well to treatment. So the doctor told my dad that he might not want to go through the harshness of chemo, but instead just get pain meds and let himself die. And when my mom and dad discussed with us as a family and came back to him to say that we had decided to try treatment, he too seemed disappointed! In fact, he told my parents "we'll see what the tests say. I might still decide not to treat you."

I just want to tell you that my dad is NOT afraid to die. I know this well. I know that when he decided to go for treatment, he didn't do it because he was afraid of death. He did it because he saw our faces. He thought of the unpaid mortgage on the house, of my mom trying to make it on her own, of how sad it would make his children, and how his grandchildren needed a grandpa, especially Joel.

I am afraid that doctor was just looking at the statistics. I am afraid that he just didn't feel, in light of the odds, that it was "worth it" to "waste" time and effort treating someone who only had a 50% chance of responding to the first round of chemo, and only a 15 to 30% chance of making it past 5 years. Just like those well meaning doctors that looked at that little baby with Joubert's thought that her few remaining days, or slight chance at a disabled life could not be worth that of a "perfect" baby who just needed a heart...

And that makes me sad, and a little worried too. After all, the days are not that far back where parents of PBD children were told to "just take them home and love them, because they will die within a year." Maybe I would have been the parent the doctors came to in order to ask if instead of a feeding tube, we let Joel pass on so that they could have his heart and kidneys...

Doctors can be well meaning, like when they are trying to help a baby with a bad heart, or they can be, well, a bit heartless, like when they tell a cancer patient they might refuse to treat them, but in any case, they are only human. They can not always tell when a patient can live or not. They make mistakes. And maybe, sometimes, they do not value life in the way they should, because maybe they are only thinking in terms of statistics, and the material world we see and touch. Maybe sometimes they think in terms of finacial responsibility and what people can "achieve" with their lives.

Maybe they can not see the eternal, or understand the true value of life. They do not think in terms of the soul or spirit.

Maybe it is our job to remind them, or maybe even ourselves. Maybe the way we judge our own civilization should not be by whether we could make it to the moon, or vote for our leaders, or write masses of books, or have leisure time, or win Olympic medals, or create new technology, or make scientific discoveries, or produce vast varieties of music. Maybe it is not about the quality of life the fortunate ones can lead, with two cars, computers, the arts, and large, spacious homes. The Romans did many of these things too.

Maybe we should judge ourselves by the love and care we give, or withhold from, the weakest among us.

Even if my father does not "beat the odds" by making it past 5 years, every single day he has had since his diagnosis not quite a year ago has been pure gold. His life was worth it to me. If I had a billion dollars, I would have given it for his life.

I am so glad, when my little baby was suffering, and we were struggling, and my heart was starting out in its journey of breaking, that God did not take my father from me. Thank you God, for giving me back my dad.