A motto of so many of our HIE families is that hope is in the journey.
For Gabrielle Shimkus, finding that hope has been a process over the last two years since her daughter Harper, the last of five children, suffered HIE at birth.
In the beginning, Gabrielle had so many fears and preconceived notions of what life would be like parenting a child with a disability. But they have also found that life can also be filled with joy, she said.
“Instead of looking at what Harper can’t do, we are learning to shift our perspective to embracing what she can do - no matter how small,” she said. “We are changing the way we measure the meaning of life. It’s not about accomplishments, but rather intangible concepts, like measuring the happiness or joy that Harper brings to others around her.”
And that is also an adventure, one that Gabrielle said she has been able to take with help from her fellow HIE families.
“For all the times we felt alone, there were people here who cared. For all the times we were scared, there were immediate comforting words. For all the times we were angry or upset, there were people to listen and not judge,” she said.
Finding the Hope for HIE community has given their family perspective, Gabrielle said.
All the families have different experiences, but that is a huge help for others who need advice or guidance. When her family needed suggestions, they were always flooded with them from their fellow HIE families, she said.
Having that network to lean on is invaluable, she said.
“HIE can be an overwhelming diagnosis, but having people who can help to keep you grounded and lighthearted at times is critical. This road has been well traveled, and while everyone’s experience will be different, it helps to have the beam of hope to guide the path,” Gabrielle said.