A father of Derek, born in 2017 with a rare genetic disorder affecting one in 15 million births, describes eight years of constant caregiving while building a leadership career. His son cannot speak and requires a wheelchair. The struggle has strained his marriage, tested his faith, and taught him that every decision costs something.
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There's been no bigger trauma that I've been enduring than being the parent of a special needs child. Oh, we were blessed with our son Derek in 2017, and, uh, he was born a little early, but very unwell. Wow. It took about 2 months for the doctors to really even understand what was happening with him. Yeah. It turned out the diagnosis was genetic, that he is one of 15 million, like one in every 15 million births. They see this rare genetic sequencing and it's incurable. There's no known cure. There's no known. And so we're, we've been troubleshooting his life the past 8 years, just believing God to sustain him, but also trying. To respond to whatever presents and to be a career person, someone who's ambitious. And, you know, I work in the space of leadership and, um, I've had to practice what I preach.
Yeah.
About elevating beyond what you think and feel, being able to differentiate what is real and what is imagined. And being able to make a plan because, you know, there are all sorts of different leadership theories that I love learning, but there's one called adaptive leadership. And what in that theory, it really talks about losses. Like every decision will come with losses and you've got to calculate them. I never imagined that I'd be pushing my child in a wheelchair. Wow. Never imagined that he'd be 8 years old and unable to speak to me. Never imagined that he'd be unable to live without constant care. And stuff like that plays a number on you. It plays a number on your core relationships, your marriage, your children, your other children that are healthy. I mean, this is the kind of thing that hits you on multiple levels. And especially if you are, you know, a person of faith, it shakes what you believe.
So you're a person of faith?
I'm a person of faith.
You're a Christian? I'm a Christian. You've served God for most part of your life. Was that part of— or was there part of you that felt that that should not happen to someone like you? Yes.
Yes.
And what's your answer to that now?
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