#justiceforethan: this is the call of the Down syndrome blogging community, and an independent investigation has been relentlessly called for.
These are our posts.
There were, it seemed, two kinds of stories told about my daughter. In one, she seemed to be a developing child. In the other, she seemed not even human. She was a defect, a tragedy, an abnormality. I did not see how she could be both.
There is an irritable exhaustion specific to primary caregivers, in the late afternoon, when you are sleep-deprived, caffeine has lost its power to revive you, and you have not had childcare for days. You have already played Chutes and Ladders and Hi-Ho! Cherry-O and Masterpiece, and each time it has taken more time to find and set up the game than it has to actually play it, and somewhere beneath the increasingly snappish exchanges between you and your children, your brain is sinking to the benthic depths of four o'clock, where the last few caffeine molecules, like phosphorescent sea-creatures, are slowly winking out.
Our second daughter taught us the responsibilities we had accepted when we chose to have our first. Laura's chromosome count taught me that every child is a genetic risk; her heart defect taught me that the risk is mortal; and years later, remembering an infant I did not know, I learn -- again -- that it is not only the chromosome, but our response to it, that shapes the contours of a life. Every tube, every wire, the violent nurture of surgery and the gentler nurture of feeding therapy, all working towards the clear pronunciation of a word: these hinged on the belief that her life was worth saving in the first place, then nurturing to its fullest potential. Everything we have done, teaching her to eat, to speak, every act of ambassadorship and interpretation, presumes the uncomplicated belief that her life is radically, democratically valuable. If we did not, on some level, believe that, we would not even have taken her home.