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For Julie Keon, hope was initially most intense in the early years of her daughter’s life.
Since then, her hope has shifted, but that doesn’t mean she is hopeless, Julie said.
“I have learned that hope is most intense in the early years but as life presents itself and you begin to settle in to how things will be. It doesn’t mean that I have become hopeless. It’s just that my hopes have changed and evolved,” she said.
Julie’s daughter Meredith suffered HIE at birth in 2003. At the time, Hope for HIE did not exist, and Julie can only imagine how much that resource would have helped her in the early days, she said.
But after joining Hope for HIE, she has seen how far she has come in her journey, Julie said.
“Hope for HIE has helped me to see how far I have come and that in spite of the challenges this parenting experience presents, we learn so much along the way,” she said.
Through Hope for HIE, Julie and other families are able to offer each other support, resources and advice learned through their own journeys, she said. Julie, who is author of the book “What I Would Tell You,” is also speaking to a group of nearly 50 moms at this year’s Hope for HIE retreat.
In her book, Julie shares her story of her journey, but also tells parents about the importance of finding their own hope.
She writes: “With so much going against you, I understand why it is difficult for the doctors and other professionals to be optimistic and hopeful about your future. After repeatedly having your hopes dashed, it may seem far less disappointing to adopt a sense of hopelessness. But like so many things, being hopeful is a choice. Life is going to unfold any way and you can choose to be in a state of hopelessness and disappointment or you can approach each day with some semblance of hope. Choose hope, cautiously so.”
And that hope can be different for different people, and can change over time, she said.
“There was a time I hoped our daughter would defy the odds and she had A LOT of odds to defy but now I just hope she lives longer than what has been predicted for her. I hope every single day that she is content and comfortable and experiences no pain,” Julie said.
“I hope that my husband and I can continue to be resilient and able to care for her at home. These are my hopes now. Not as dramatic as they were in the early days.”
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