Formerly, when religion was strong and science weak, 
men mistook magic for medicine.
Now, when science is strong and religion weak, men mistake medicine for magic.
Thomas Szasz, The Second Skin, 1973

We have had two colossally devastating but enlightening doctors appointments of late.  The first was with Lula's geneticist, who explained that she has something called demylenation.  What this means is that the white matter around her nerves is lacking and therefore it inhibits conduction or communication between the nerves.  Also her corpus collosum, the part of the brain that connects the left and right sides, is small.  He said that essentially this means that it is unlikely that she will ever walk or talk or do much that a "normal" person does.  He was compassionate in his delivery but did not offer much hope.

Our next appointment was with the neurologist.  I am aware that people will often blame the messenger for bad news, but all news aside, she sucked.  I thought she might be able to add more nuance to the geneticists explanation, maybe have diagrams of the brain to explain what was on the MRI.  She did not.  She repeated some of what the geneticist said, but her delivery was akin to a mechanic telling you that the transmission in your 1990 Honda is going and there's nothing you can do about it.

Neither doctor offered support groups, counseling, or fellow parents to contact.  The neurologist started to put on her jacket and said "I'm going to let you go now" when I was still sitting in her office sobbing.  Clearly she had moved on already.  She basically suggested we put a DNR on Lula (Do Not Recusitate), take her home and wait for her to die.  I suppose to her not having a properly functioning brain means that your life has no purpose.

Here is what I have realized about doctors;  I have asked too much of them.  They can read MRIs and do blood tests and diagnose things.  They cannot tell you how to live with the information they give you.  They have no clue what it is like to be the parent of one of their patients.  They never ever have to change and bathe and feed their patients. They are scientists, which makes most of them great doctors but absolutely shit philosophers.  Do not ask someone who spends 100 hours a week working what the point of life and existence is for someone who will likely never be able to have a job. 

The night of the geneticist appointment I emailed my neighbor Eliza who has an 8 year old son with Cerebral Palsy and she came right over with a big smile and a bottle of wine.  She is amazing. A M A Z I N G. She said that the first year of her son's life every doctor's appointment made her feel like utter shit.  He failed every test. He can't walk or talk and he will certainly never become a neurologist.  But he loves music and the ocean. He horseback rides and eats chocolate croissants in the park in the morning.  He is completely dependent on others for his care, but he gives so much back to them in return.

I have noticed that the further away I get from doctors appointments the better I feel. I don't think this is denial, I think this is perspective.  Even the most concrete medical diagnosis is still only one piece of the pie.  The diagnosis pushes you to a place that most people are too terrified to ever be, the place where you wonder what the point of existence is, why we are here, what our purpose is.  I realize now how unbelievable narrow my perspective was before.  Our purpose is not to excel, to achieve, to be talented, get into college, get a job, and support ourselves. Our purpose is not even to be self sufficient and independent.  We may be all of those things at some point in our lives but we will also not be any of these things at other points.  Right now I can say that the only purpose, the only purpose is to love and be loved.  The rest of it is all distraction and circumstance.  I don't think I would have ever begun to realize this without Lula.