A personal reflection on "A more perfect human"

One of my students, Jason McCart, provides a very personal reflection on two of my earlier posts:

After having had a conversation with a person this weekend, I felt compelled to respond to Michael Scaperlanda's posts "A more perfect Human" and "The Worship of Retardation."  My 7 month old daughter is presently an in-patient in Denver Children's Hospital and has been for about 6 weeks.  Last Thursday night she received the liver transplant we had been waiting for since she was born.  Our daughter is our first child, and my wife and I were overjoyed when she was born.  The range of emotions, circumstances, and stresses were unimaginable, nearly intolerable.  But, as of last Thursday, we made it.  Our daughter was pretty ill by the time she received a liver transplant, but the transformation in her since then is nothing short of miraculous.  She's like a different child, a "normal" child.  For the second time in our daughter's life, we are overcome with joy.

But there are other families in the same hospital that haven't been so lucky.  Their children may need to have multiple organs transplanted, or they just can't stay healthy enough for long enough to actually receive a transplant.  My heart hurts for those families and those children.  They are hanging on, day to day, hoping for their miracle, knowing it may not come.  They know that it's possible their little one may not be long for this world.  I've been there.

One of these is a single mother whose 2 year old son is waiting on a liver transplant.  But this child is very ill.  Every time they think they may have an organ, something always seems to be in the way.  He has a fever, or his white cell count is too high, or he's lost too much weight that week, and so on.  She is really struggling.  She's alone with her son, as near as I can tell, and we look in on her daily.  She was so happy for us when our daughter was transplanted, genuinely happy, and yet her son needs the same thing and can't seem to get it.  He's been waiting much longer, too.

One day, this woman had some visitors.  I was pleased to see that someone had come to see her.  They brought flowers, toys for the little one, and a basket filled with food.  I stopped by to introduce myself and tell them what we shared.  As the conversation turned serious, the women in the room asked for a rundown of the little boy's condition.  "Well," the mother explained, "he is getting to the point he really needs a liver.  His condition will improve, then worsen, and then improve again for a while . . . but it's like one step forward and two steps back."  "What will happen if he doesn't get a liver?"  "Well, you can't live without your liver, so eventually he would die." 

Next was the moment that brought me back to Michael Scaperlanda's posts.  The visitor looked this mother in the eye and asked "Well, don't you think that maybe that would be for the best?"

It's hard to describe my physiological reaction to that question.  My hands started to sweat.  My stomach was queasy, and my eyes lost focus.  Even if you, for some perverse reason, actually believe that it might be for "for the best," why would you ever put that thought into this mother's head?   Some of the others tried to change the subject quickly, but the damage was done.  The mother turned to her little boy and started stroking his head.  I knew exactly what she was feeling – that she might lose him, and no one would care.  You see, for that particular visitor, that little boy's life was imperfect, and therefore not as valuable.  I'll bet she would never have asked the same question of a mother whose child was "healthy."

I caught up to the visitor, a middle age woman, later that night in an area on the floor resembling a lounge.  We exchanged greetings, and she told me that she was happy my daughter was doing better.  I thanked her.  She asked me if I thought she had hurt her friend's feelings earlier.  I told her that "yes, I think you put an idea in her head that scared the hell out of her."  I asked her if she knew what she was asking, and we talked about the implications of her idea, and I could tell it was easy to change her mind.  I think that she just hadn't thought through what she was saying, but in the future I'm confident she will.  Still I thought it was remarkable, and very telling, that such an idea would even crop up in that place and under those circumstances.