One of the classes I am taking this semester is Anatomy and Physiology of Speech and Hearing.  I have found it quite interesting – more than I thought I would, if I’m honest.  One particularly interesting unit – Articulation – discussed the four stages of swallowing. Yes. Swallowing is a four stage process, involving a TON of muscles and coordination and systems working just right….

Honestly, it’s a wonder any of us are successful at it.  And it’s no wonder Kiran struggles with it.  Very interesting.

Right now, we are in our last unit.  Advanced neurology.  We already had a basic neurology unit at the start of the semester.  And today, I read something that immediately brought me to a stage in the grieving process: anger.

Here it is:

“The cerebral cortex is important to humans, but people can live without major portions of it, especially if the damage is done early in life. Babies are sometimes born with half the cerebral cortex missing, yet they grow up with normal mental abilities.

Hydrocephalics can suffer compression of brain tissue. “One of these patients gained a first-class honors degree (Sheffield University) in mathematics and is socially completely normal. And yet…has virtually no brain” (Lewin, 1980, p.1232, quoted in Maratsos and Matheny, 1994).” (I should cite this source; I have honestly accessed so many sources throughout my studies today, I am not sure which one it is and don’t care enough to look for it.)

These very serious, very hefty problems with brain structures can occur in people…and they can have fairly normal intelligence and development.

And it’s not fair.

I’m not a neurologist.  But. I have learned enough to understand that the brain abnormalities Kiran has would make it very difficult for him to have “normal” (what a crappy word) mental abilities.

In fact, I understand it maybe more than I want to – except that’s not really true.  I have appreciated this course so much, because it has helped me understand some of the challenges I see daily.

But reading that today made me want to be a two year old throwing a tantrum.  It instantly brought tears to my eyes and anger to my being.

I don’t often get to this place.  It is a part of the grief cycle, though, and since I am continuously going through that cycle over and over and over again, as Kiran’s mom and caregiver…it’s bound to come up from time to time.

So allow me to say again: It’s not fair.

It’s not fair that he has an intellectual disability.  It’s not fair that new skills are so much harder for him to acquire than a neurotypical kid.  It’s not fair that he still hasn’t figured out how to stand on his own or mastered protective responses.  It’s not fair he can’t coordinate a safe swallow.  It’s not fair he can’t say “mama” or “I love you” or … anything.  It’s not fair that most of the time he doesn’t even care to make a choice about anything or have any volition in his own life.

He’s four.  And it’s not fair.  And I’m angry about it today.  I’m sad about it today.  I’m devastated about it today.

It’s not fair.