Life and Death: Thoughts on Jahi McMath

If my son, who has 47 chromosomes, were to have a life threatening emergency in a hospital, what would happen?  Would his fate be the same as every other child in the same situation?

In Oakland, California (where we live) at Oakland Children’s Hospital (where we take LP for most of his medical care), a little girl underwent surgery to help with her sleep apnea.  Even though she seemed fine after waking up, soon afterwards she went into cardiac arrest after starting to bleed.  The hospital declared her brain dead.  To the hospital, the question wasn’t whether to not take that girl off life support, but when. Her family disagreed, and they’ve been in the news ever since. Read the rest of this entry »

Fickle Friday: Week Recap

I’ve been trying to write on and off all day.  Maybe because I’m sleep deprived, maybe because my mind is trying to hold too many things all at once.  My heart is fickle today.  The kids, disability, laundry, extra chromosomes, preschool, echocardiograms… Sometimes I feel like my skull is full of marbles just crashing into each other at random intervals.  I think I have maybe five really big posts in my head and I can’t seem to get any of them out.  Bullocks. Read the rest of this entry »

The thyroid is connected to the…

Dear Mama,

Yeah, my thyroid doesn’t quite function ideally.  It is true.

I’ve been secretly trying to clue you into this, through a bunch of carefully timed, meaningful glances, not to mention the bunch of times I just outright said it to you.  Unfortunately, I am only able to make vowel sounds, and a very few (uh, two) consonant sounds.  Maybe you didn’t understand me. Read the rest of this entry »