By Nicolette Friend
You know, I think I find myself giving up hope.
Or maybe hope is just changing into something I didn't know it could be.
It's getting harder to work hard at things that seem unattainable. I work on her strength and flexibility because life sure would suck harder without those. But she's content with just laying in my arms and staring in my eyes.
Any parent of a child with special needs knows the poem "Welcome to Holland."
In the beginning, this poem resonated with me. I was in shock over my child's diagnosis, hypoxic ischemic encephalopathy, and what that would mean for our future.
But as I came to grips with our life and our new normal, the poem became a cliche that I just didn't want to hear any more.Read more
By Michelle L. Hughes
There are some universal truths in life: what goes up must come down, the pen is mightier than the sword, and the worst line to be in is the one for Santa Claus.
So here I am, a mom of two kids: one bright and bubbly 10-year-old daughter and one very handsome little 3-year-old guy, who happens to have HIE.
Before I had our son with HIE, I dreaded the Santa line. I would plan a trip with my daughter to avoid the long lines so we could get a few extra minutes with Santa to get the right picture. But the last few years have presented new challenges because now we have a special needs child.
After four months of feeling alone, worrying and wondering, Anika Fella decided to try to find other families like hers, who had gotten the diagnosis of HIE.
Her daughter Chloe had suffered HIE when she separated from the placenta during the delivery of her twin sister. To their family, HIE had so far meant more than a month in the NICU, tubes hooked up to their baby girl, beeping machines and never-ending worry.
Anika was a member of some twin parent groups online, and wondered if there was even a slim chance there would be resources and support specifically for HIE families. And then she found Hope for HIE.
First, their lives were consumed with grief, then uncertainty, guilty and trauma.
Reeling from the grim prognosis for their daughter, who had suffered apnea and uncontrollable seizures 12 hours after birth, Melanie Riggins turned to the internet.
She was terrified at the words the doctor had told her: little to no quality of life. And she needed something to grab onto, some form of hope. But her searches didn’t turn up much.
“Those first frightening days turned into months. The unknown, the uncertainty, the guilt and trauma bled into our lives but, still, we reveled in each milestone met,” Melanie said.
A year into their journey, they found Hope for HIE. And they felt they finally had found home.