About Tagging Me in That Post…

A few months ago, a post made the rounds about a boy with Cerebral Palsy completing a triathlon. What a wonderful achievement for that boy to complete such an intensely physical feat, seemingly against the odds! But with the sharing of that video, came the onslaught of beautiful, well-meaning friends who kept tagging me on that photo and sharing the video to my wall. Some even sent it to me in a private message.  

There was probably a time when seeing such a video may have given me hope; that the possibilities for my own child with Cerebral Palsy were infinite. That despite the predictions for negative outcomes we may have heard, my child may still be able to achieve great things. But now, a few years down the road, we are comfortable with our child’s diagnosis and we know he will be able to reach his full potential, whatever that may be.

Which got me thinking...who gets to decide what his full potential is anyway?

Read more

Why We Took Our Son to a Ballgame Instead of Physical Therapy

Life can be pretty overwhelming when your precious child receives the diagnosis of hypoxic ischemic encephalopathy (HIE). Your hopes and dreams of motherhood shift, and your life is intensely focused on therapies, doctor appointments and research. You wonder how people are able not only to attend all of these appointments, but also manage to implement the slew of home programs that occupational, physical and speech therapists hand out. And what about actually having the time to enjoy motherhood?

The first 18 months of my son Max’s life were spent this way. I cried almost every single day during that time. I grieved the loss of control, the loss of what could have been, the rough start, the new normal we were forced into. I also made sure we attended every appointment, asked a multitude of questions, implemented every home program and researched every single mainstream and alternative treatment, no matter if they were applicable to my child or not. All in an effort to find to find a “fix.”

Read more

What Should've Been - An HIE Dad's Poem

"What Should've Been," by Nick Burton

What should've been
A dream unfulfilled, but forever imagined
So unextrordinary a fantasy, unrealized
Should've been

Read more

GoTo Seat

Firefly makes multiple excellent products for children who struggle with mobility or seating. For some children, the GoTo seat has been a great fit. For our little one, it doesn't work in all situations because of her low trunk control and head support.

Read more

Fisher Price Space Saver high chair

This compact high chair was a lifesaver for us when our daughter was smaller. We used it for positioning, feeding and therapy.

Read more

Spread the word Volunteer Donate


get updates