- Who We Are
- What is HIE?
- For Parents
- For Clinicians & Partners
- Get Involved
- HIElights of Hope
Beth, mom to Rowan, recently joined the Hope for HIE Parent Support Hub on Facebook. Rowan is three years old and was diagnosed with HIE (hypoxic ischemic encephalopathy) at birth, and with global developmental delay at six months old.
“Finding the Hope For HIE group has helped me in so many different ways the past few months. I’ve connected with some truly amazing people. I have felt so alone the last three years because none of the people in my life really understand how hard it is to have a child who isn’t on the “normal” developmental path, and I hate using that word because Rowan is MY normal.
A few weeks ago I posted in the group and was really conflicted on whether or not I should/could take him on vacation somewhere. He doesn’t talk or walk. He can army crawl and booty scoot. He has a gait trainer, but it isn’t really something he uses to truly be mobile, so I wasn’t sure how easy it would be to take him somewhere far off.
Lots of the parents in the group gave tons of suggestions and this past Monday I drove down to the Mississippi Gulf Coast (about three hours from me) to visit my sister and we took him to the beach.
HE LOVED IT!
He’s always loved the water. Bath time is his favorite and he loves the pool but his face when he saw the ocean was INCREDIBLE! He was so excited. He wasn’t quite sure about the sand at first and couldn’t quite figure out how to scoot across it, but he was so happy.
Seeing him that way made me feel so hopeful for him. That same day, I booked an AirBnB in Pensacola for me, my husband, Rowan and our nine month old for June! Thank you so much creating the group. It truly is an amazing group.”
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.