Focus on what they CAN do

By Ashley Fielding

Is your child able to roll? Are they able to sit independently? Are they saying any words? Are they able to hold their own bottle?

These are the questions I have to ask. It’s my profession, it’s my job, it’s how I determine whether someone’s child will qualify for services.

But is it what I wish I had to ask you as a fellow parent? Absolutely not.

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We're partnering with The Mighty!

We're thrilled to announce a new partnership with The Mighty, a website focused on improving the lives of people facing disease, disorder, mental illness and disability by sharing their stories.

We will now have our own home page on The Mighty and will be connected to the stories our families submit to be posted.

With this partnership, we'll be able to help even more people!
Here's an example of the kind of stories on The Mighty: 8 Things I Wish I Knew When My Child Was Diagnosed With a Rare Disorder

We encourage you to submit a story to The Mighty and make your voice heard.


Being in the moment

Three years into her journey with HIE, one mother took a moment to reflect on how far her family has come.

 

Jen Greenway gave birth to her baby girl and immediately started on the roller coaster of HIE.

 

Jenessa Hope was not breathing, and had to be resuscitated. Her parent watched helplessly as doctors worked to help their baby girl and then tearfully said goodbye as she was sent to the NICU at another hospital.

 

“We honestly had no clue what had happened, just didn't understand how this could be,” Jen said.

 

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Never give up

“When you think you’re at the end of your rope, tie a knot and hold on.”

It’s a quote that one HIE mom wants to share with other families on their HIE journey.

Hope is never giving up, Jessica Mizel said.

 

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Be Fearless

By Melissa Waller Longshore

 

It was field day and all the children were going down the Slip and Slide, including the special needs classroom.

The only child not going down the Slip and Slide was my child. He was at the bottom watching everyone slide. In the corner of my eye, I saw him and I saw the look in his eye.

It was a wistful look. It was a look of “if only.” If only, I could do that, go down that slide, today.

 

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