“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 […]
Any parent of a child with a disability 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 cliché that I […]
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. […]
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 […]
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 […]
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
