The decisions of life and death are not easy to make, whether it's about a loved one on life support or the need to spare a beloved pet suffering. As
one family struggles with the harsh words of an insensitive doctor, our family is dealing with the economic realities of
chronic health issues in a pet.
We're used to outrage in the disability community, of hearing or reading a story and running with it. Sometimes, it's to attack and condemn other parents or individuals, but sometimes, when the disability community works well, it's to gather together to bring about change, to fight for a family.
This time, it's to protest a doctor at CHOP who told a family he would not recommend a transplant for their young daughter because of her cognitive disability.
In the autism community, there are plenty of heated opinions, which lead to even more heated attacks against those who believe differently. Some of the fiercest attacks come from those who believe in debunked treatments like facilitated communication. No other treatment offers such fantastic results. Autistic individuals who've been unable to talk, write, communicate are suddenly able to speak eloquently with the help of a facilitator.
For a desperate parent, it must be a dream come true--one's child communicating finally, the words flowing. All those hopes and dreams suddenly realized, parents are not likely to be skeptical of this sudden flowering of skills.
The pressure that's squeezed me for months has loosened. It had gotten progressively stronger, more forceful, wringing me exhausted even before the morning started. It's loosened, but it's not gone, and I know that it won't ever fully leave. I will get periodic reprieves, opportunities to rest, and I must make the most of those moments so that I am girded and ready when the pressure tightens again.
I am not unique, not even extraordinary. I am a mother, a wife, a daughter, a sister, an aunt, a teacher, a friend, and so I am pressured. Each and every day, as I expand my heart and let more people into it, I am pressured. I am squeezed with worries and concerns and fears.