Throughout this ordeal we learned of a whole new type of sorrow (who knew there were so many different types of pain?), but also a whole new type of appreciation and love for one another, and for the child my wife is busily building.
Genetics have never dictated my achievements, so I don't think anyone should assume life with Turner's will be awful. Doctors and genetic counselors need to provide a fair and accurate representation of the disorder -- which should include the stories of people like me.
People with Turner Syndrome are complicated and contain many layers and multiple identities, just like any other group of people. While we do have social media and the Turner Syndrome Society's annual conferences to keep in touch and find people who have gone through similar experiences, there is definitely something to be said about being able to see a reflection of yourself in popular media.
Having TS isn't easy. It involves loneliness, isolation and the feeling that nobody on the outside will ever get it. But it also means meeting wonderful people at conferences and chapter meetings who get that finding people in the circle is rare. I may hate the things that come with having Turner Syndrome, but I can never hate the syndrome itself.
"The Bird Lady of Astoria," as everyone calls her, has been known to drive her chair all the way to Astoria Park, which is about 5 miles from her apartment. It's no big deal , she says, because the chair can go 15 miles without a recharge.