There's a battle going on

By on January 23, 2016

There’s a battle going on in the special needs community.  I first became aware of it when I followed a link a mother had posted on facebook to Lauren Swick’s article in the Washington Post. In the article, entitled Writing for the Mighty, for my son and with my son, she talks about the debate Read More...


A call for help – Centronuclear myopathy

By on January 21, 2016

I got an email today from a friend. She said there was a family in Wellington who needed help. Their infant daughter, who is 11 weeks, has just been diagnosed with Centro-Nuclear Myopathy.  They have been in the NICU for 11 weeks and while they have a dianogis, there are still so many unanswered questions Read More...


i fear no fate

By on January 13, 2016

This trip has felt at once exciting and terrifying; exhausting and invigorating.  I have been inspired and anxious, panicky and confident. I have sat for hours in airport terminals and train stations, and slept on planes, trains, air mattresses and couches. I have felt a deep sense of connection with the people I am staying Read More...