Finding Hope in the Dark

Before she found a group of families whose children also were affected by HIE, Emmy Heaton felt alone.

She had joined other online groups, including one for children who had been cooled at birth, but many of the children there were mostly unaffected.

Emmy’s son, Aj, who is now 3, was initially given a very grim prognosis. Since then, he has been diagnosed with cerebral palsy, autism, developmental delay, and most recently epilepsy. He also has one of the cutest smiles in the world.

When Aj was about 6 months old, Emmy found Hope for HIE, and didn’t feel so alone anymore. She has support from around the globe.

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Baby Grey's Story

With his baby boy in a NICU bed, Nick Burton knew what had physically happened to his son at birth, but he kept hearing three letters from the doctors: HIE.

Nick knew baby Grey had aspirated meconium at birth, had to be intubated and then was sent to special NICU for head cooling. He also knew Grey's heart was damaged and he had a collapsed lung. But that didn’t explain HIE, and what that would mean for his family long-term. So, he turned to Google, a terrifying place for any new parent, but he found something else -- a foundation called Hope for HIE. Finding that group saved him, Nick said.

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Fall Sensory Fun for Everyone

Are you looking for a fun Fall craft that is doable for any ability, mess-free, and festive?  My son Huxley and I found a great way to make some fun decorations using a pumpkin shape cut out of construction paper, a little plastic wrap, some blobs of paint and some tape.

I laid the pumpkin on top of plastic wrap, added blobs of paint then plastic wrapped on top and taped it down, voila! Huxley loved it!  Remove the plastic wrap, let dry and hang up! Happy crafting!

 

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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?

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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.”

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