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Sofia's Soundtrack
In “SIR DUKE”, Stevie Wonder sang Music is a world within itself, with a language we all understand. With an equal opportunity, For all to sing, dance and clap their hands. What’s not to love about this sentiment? Music unifies and brings together — without reprisal or judgement....
Beyond Measure
Milestones. Benchmarks. Firsts. I was armed with all the new parent knowledge I could get my hands on as I prepared myself for Sofia’s birth. But, the best laid plans and all that. Turns out there’s really not much of a playbook for the arrival of a 28-week premature daughter....
A Balancing Act
MATERIALS ~ two jump ropes (or 4' length of rope) In May 2012, at almost three years old, Sofia began to use a reverse walker. This was a huge milestone for her and for us as a family. She had worked hard on stepping in physical therapy — typically with either someone holding...
Always Listening
The diagnosis of our daughter with CP came less than a month after I had given my notice at the office. I had returned to work following maternity leave and I enjoyed the intensity and contribution I made at the technology company where I worked. But, I did feel that push and...
Drop the Mic!
The air in the house that morning was electric. Sofia was invited to her friend’s fourth birthday party and it was being celebrated at a local gymnastics studio. Some of the other children in her preschool class took lessons there, so she had heard all about the tumbling and jumping...
Iceberg, dead ahead
Lots has been written about how people use Facebook and Twitter to post the version of their life they want people to see — the one that leaves others whistling softly under their breath — sometimes with delight and sometimes with envy — to see their friend living such a charmed...
Tiny Dancer
From the time she first discovered “Angelina Ballerina”, Sofia has loved to dance. As with any baby, her early dancing days looked a lot like bouncing around on the floor. As we learned her CP diagnosis, music and dance continued to play a huge role in her excitement to move....
Create a camp
Ahhh, summer. Blue skies...warm breezes... barbeque dinners. I love summer and the slowed-down pace of days. Sofia still has physical therapy, but there isn't the stress of managing a school pick-up and dashing across town to get to her appointment on time. There are also waaaay...
The Whole Self
About a week after we first learned of Sofia’s diagnosis, I received a call from her pediatrician. She had been advised of the test outcome by the hospital and had called to schedule a follow-up visit. I was grateful for the outreach and went to the appointment with my daughter,...
Keep Calm and Grin On!
Over the course of the last three years, we’ve been on the receiving end of a number of curious glimpses and bewildered looks. It could be a sideways glance from someone tracking our daughter’s progress with her walker — or an overt stare when they caught sight of her with her...
Pulling focus
I’m no photographer…the truth is that most of my photos are taken with my cellphone. But, I admire the work of many photographers — both in print and film. And, I’ve always been intrigued by the role of the focus puller. Often called ‘1st assistant camera’, it’s the member of...
Monkey-see Monkey-do
How are we going to approach activities and outings as a family? That was one of the very early conversations Jeremiah and I had after Sofia’s diagnosis. It ended up being a brief discussion, as we quickly agreed that we would bring her everywhere and she would enjoy the same...
Oneness, not Sameness
Recently, Sofia spent a fantastic afternoon with a bunch of friends. Want to peek at the promise of the next (next) generation? Just observe a group of six-year olds come together as a relatively new set of friends and figure each other out. Over the course of the afternoon, there...
Thanks for nothing
About a week ago, I had Sofia along with me to do some errands. Characteristically, she was chatting away — sharing stream of consciousness thoughts (“I am spending a lot of time trying to figure out why hiccups go away when you get scared”) and commenting on her ideas for careers...