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category: Musings
Trial and Effort
Since Sofia's diagnosis, there are times when I feel like I'm on a constant treadmill to learn about Cerebral Palsy. I want to educate myself about the myriad treatments and therapies that are out there to find what might work best for our girl. No matter how many sites I find...
My little teacher
Recently, we attended an amazing Easter egg hunt hosted by friends who get more done in a day than I can hope to get done in a week #LifeGoals Truly, these guys are amazing. They welcome families to their home. They hide 300+ eggs with treats inside. They address the more than...
From Grief to Belief
(or, a Valentine to CP in gifs) Dear Cerebral Palsy, When I first met you, I didn’t like you. At all. I didn’t want to give you the time of day and I definitely didn’t want you hanging around my daughter. So, for the first few days after Sofia’s diagnosis, I pretended you didn’t...
Truth is bliss
I've been thinking about this photo since it showed up in my Facebook feed this morning. It was taken seven years ago, and Sofia was just about one and a half years old. At the time of this photo, she was not yet diagnosed with Cerebral Palsy. That would come two weeks later....
Refill the Glass
A conversation I had with a friend recently may sound familiar to many of us with kids. My friend said "I'm just exhausted. They take take take." I nodded. I confessed to her that I have spent a fair amount of time thinking about the demands of children. Sure, Sofia has different...
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...
Star Wars Wisdom
Whether it is friends posting pics with their theatre tickets in hand, someone wearing one of the many options for logo’d merchandise, or a family member asking coyly “Can we talk about this movie yet?”, my social media feed has been flooded by posts about Star Wars: The Force...
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...
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....
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....
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...
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....
Spotting the unicorn
Peace. I find myself on a daily quest for the sweet sanctuary of peace. I’m not just talking about peace and quiet (although that sounds really, really good too), but just good ole peace. Peace of mind. The peace that comes from the absence of worry. And, let me tell you something...
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...
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...
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...
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...