With her son in the NICU, Margaret Stuart stumbled across her new support network while searching for any information she could find about HIE.
Margaret’s son, Merritt, suffered HIE at birth and has since been diagnosed with cerebral palsy, and has a charming personality that wins everyone over immediately.
A Google search turned up Hope for HIE, and Margaret immediately found a support network that has grown in the four years since, especially when she attended an annual retreat and was able to meet fellow HIE families in person.
“To sit across from someone and just easily talk about your kids without having to explain anything or make it sound better than it is feels so good,” she said.
Through Hope for HIE, Margaret and her family were able to connect with thousands of other parents across the world, sharing their triumphs and heartbreaks, offering answers and experience and most of all, supporting each other.
“I know that if anything happens, we have an upcoming procedure, or I'm just having one of those days, I can reach out to friends on Hope for HIE and find support. I am surrounded by love and support in my family and friends but I also need this group of parents who've been through what we're going through,” Margaret said.
Those connections have also helped her heal, and changed her idea of what hope looks like for their family.
Instead of tracking milestones and mourning the ones Merritt hasn’t hit yet, she can just hope Merritt is happy, that he knows how much he's loved, and that he always has a good quality of life, she said.
“Hope for HIE helped me realize that it was OK, Merritt didn't have to meet milestones for us to all be happy. As I healed and accepted Merritt for who he was without focusing so much on what he could do, I realized the hope I had for his life had changed too,” Margaret said.
She knows just how important that support network is for families, and she hopes more families will find what she has found in Hope for HIE.
“Having access to thousands of other mothers who've been there gives you the strength and reassurance you need to keep putting one foot in front of the other,” she said.
“Seeing a new mom or dad post their baby's NICU picture, telling their story, breaks my heart but at the same time I love seeing that they found Hope for HIE early in their journey because I know they will find hope. I know they will not feel so lonely and isolated anymore.”