Kelly Speck, a Washington, D.C. mother of three, accountant and author faced a frightening reality when her eldest son was born: uncertainty.
Bennet, who has quadriplegic cerebral palsy, spent his first 70 days in the NICU. For a long time, the Speck family didn’t know what the extent of his disability would be.
“We knew he was going to have some issues, but we didn’t know what,” Speck says.
In her book “Hope in the Heartache,” she discusses dealing with uncertainty, the dark moments, mental health, addiction and siblings. But, most importantly, the book’s message is that there are good people out there. “Beautiful, good people, if you open your eyes and accept the help,” Speck says.
She also addresses the expectations society has for people and families with disabilities.
“It’s like, the more you give, the more deserving you are. We need to stop, take a moment and return to the dignity of life. Parents shouldn’t be made to feel guilty for having children with disabilities, or [for] the resources they require,” Speck says.
“Bennet’s life is special, meaningful. He’s such a shining light in this world. We’re so blessed to have him. This book is a celebration of his life and others like him,” Speck says.
Bennet, who is 100% formula fed because of his gastric tube, requires a specific bed and van, and a ramp to get in and out of his home. These resources, Speck says, are not covered by insurance.
“I would just say, I feel extremely fortunate to live in the Washington area with incredible medical care, and you have choices,” Speck says. “I don’t take especially the medical care and the diversity of humanity here for granted. It’s a gift. It’s something to be celebrated.”
Speck has two other children, Jackson (12) and Reagan (10). She shares more about raising Bennett, his siblings and her own work-life balance.
What are some of the challenges associated with Bennet’s condition?
We don’t know Bennet’s life expectancy; some resources say teens or early 20s. We don’t know how much time we have with him, and I don’t want to miss a minute. I work my schedule to maximize my time and moments with him.
What is life like for Bennet’s siblings?
As hard as it is to be a sibling of an older brother with disabilities, my younger kids have had to see the world doesn’t revolve around them. My two other kids—not that they’re on the back burner—but [they see] the beauty and relief that it is when there’s a bigger picture to life. There are hard days, hard challenges and hard discussions, but they have compassion for those not like them.
How do you balance work and family life?
I work part time, here and there in different ways. I’ve had gracious employers who have offered great flexibility. So, I would say the graciousness of others and not necessarily getting a lot of sleep! I’m just kidding—I’m a night owl. We have a night nurse who comes and stays with Bennet so we can sleep.
We didn’t have any help for the first 10 years of his life, but once we started getting the night nurse support, I could sleep, work and function.
I’ve had to turn down multiple full-time positions. It’s just not worth it— the commute, stress and staffing it would require. It’s not
worth it.
What do you hope your children learn from you?
I hope my children learn that all people have value, dignity and worth and that love is all we need. As a mom, it takes a lot of energy to make sure my three kids are given all the love and attention they need. My biggest fear is that they would resent me or resent him. We need to get back to the basics and treat people kindly with love and respect.
Family favorites
Meal: Taco Tuesday!
Dessert: Ice cream sundaes for sure!
Family Activity: We love the [Great] Smoky Mountains; there’s a small town in the valley, and it’s just a place of peace for us.
Vacation: Condo in Bethany Beach, Delaware
Book/Game: We love a good game of Life as a family (that’s ironic), and book? The Bible.
