After his son was born, Andy Chrestman quickly got a crash course in brain injury, and found there are no simple answers.
More than a year into their journey of trying to find answers, Andy and his wife Sarah came across Hope for HIE and found an instant community.
“The brain is the control center of our lives and when it is damaged, there are thousands of issues - some obvious, some less so - that you have to deal with. Getting answers to questions and finding common ground to dealing with these issues was very challenging. But when we found Hope for HIE, we finally found our community,” Andy said.
Andy’s son Kohl suffered a lack of oxygen and blood flow to his brain during birth and was diagnosed with global brain damage. Four years later, he has been diagnosed with a developmental delay and seizure disorder and has a G-tube. He is considered non-verbal, but his dad isn’t convinced, and has seen him makes lots of progress in many areas.
“Beneath the veneer of disability, I know with utmost certainty, that there is an intelligent and beautiful soul that will slowly, but surely emerge over time,” Andy said.
Since finding Hope for HIE, Andy has been able to get honest and credible answers to questions, find resources and new suggestions, while also creating lasting friendships. He now serves as the vice president of fundraising on the Hope for HIE board.
“While no journey is the same, there is an instant bond when you meet another parent or caretaker that gets it,” Andy said.
Having close friends and family to lean on during this journey is important, which is why Andy encourages families to connect though Hope for HIE and meet others who can understand what they have been through.
And most of all -- even more than any therapies or appointments -- love your child. He remembers a day when their family was overwhelmed and unsure of what to do. They asked a doctor what they could do to best help their son. Her response: just love him.
How does he find hope in his journey? By living in the moment and taking each day as it comes, Andy said.
“When you have experienced true darkness, then you can much better appreciate true life. That is hope,” Andy said.