And then some days you drive to the mall and the “handicap” accessible parking spots are not only plentiful but bountiful. And there is plenty of room on either side of the lines so you can safely unload two kids. … Continue reading
Dear Lena Dunham, Listen, I love GIRLS. Have loved your show from the beginning. And up until the last episode, season three just kept getting better. The comic timing remains whip smart. The characters began as comical caricatures and are … Continue reading
I divide her body into files. Her kidneys get a file. We track their dilation annually with the ghostly white images of ultrasounds. Her brain gets a file: in it, the MRI report, describing a thinning corpus callosum, the reason … Continue reading
Today is International Wolf-Hirschhorn Syndrome/4p- Awareness Day. In support, we wear jeans (for rare genes) or blue. I’m going to pass the microphone to Fiona’s father today, who so eloquently wrote this: Dear friend, Fiona my daughter has this rare genetic … Continue reading
A guy visited our house with two wheelchairs today. His visit brought mixed emotions. I’m a little sad. She’s almost three, and walking safely and independently seems a ways off. I’m grateful. I watched Mr. Wheelchair Guy and Fiona’s physical … Continue reading
Your odds of becoming a professional athlete are twice as good as your odds of being born with Wolf-Hirschhorn Syndrome. Never in a million years, we say, but if you were to live a million years and if you had … Continue reading
Star In Her Eye 