When Nykole Nichols has a question about her son, she can’t always turn to the friends and family she always thought she would.
With Jude, who was injured at birth and is severely affected, it’s often more complicated. Their questions are about equipment, specialists and therapies.
“We can’t just call our family or friends and ask for advice like typical first time parents. Our questions are usually questions that they couldn’t answer. All they can do is just be there and be supportive. Be our shoulder to cry on,” Nykole said.
“The Hope for HIE community understands our questions, since they are going through similar trials and tribulations. They understand on a different level than the average person. They have advice or just words of wisdom.”
Nykole found Hope for HIE after searching for HIE on Facebook. And since then, she has found a family that supports each other, she said.
“Our journeys are not the same and many are so different, but we support everyone. We can even just rant about things typical people would never understand. We are a family,” she said.
When Jude was recently admitted to the hospital, Hope for HIE sent her a fruit basket.
Friends she has met there have sent her message of support, care packages and equipment to try, she said.
When she has questions, someone has an answer, she said.
That support means the world to her, Nykole said.
“It shows that we are not alone. We all mourn together, we love together and we show compassion together. We have each other’s back when other people couldn’t possibly understand what we are going through,” Nykole said.
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