Imagine giving birth to a child with a rare metabolic disorder, and then having another nearly four years later with a more severe, unrelated genetic condition. How would you cope with the challenge of raising two special-needs children?
Kristin Faith Evans and her husband, Todd, can imagine. They’re living it.
I met Kristin at a writer’s conference a few months ago. As we chatted in a hallway, she shared a little of her story. My mouth must have dropped open because I’d never met anyone who faced as many day-to-day challenges.
How did she cope?
How did she manage to write two blogs and a book, while raising two kids whose health issues would overwhelm most? I understood she was a mental health counselor, and, therefore, familiar with coping strategies, but even so.
Kristin’s 15-year-old son, Alex, was born with a genetic metabolic disorder that causes medical and developmental complications including seizures. Extraordinarily rare, only 25 documented cases exist in the world. Her 11-year-old daughter, Bethany, meanwhile, has Cri du Chat Syndrome. This rare condition occurs in only one in 20,000 to 50,000 newborns.
As she explained, it’s not uncommon for siblings to be born with the same genetic disorder. But two different types? That’s rare.
A few weeks ago, we spoke at length. Again, she impressed me with her openness and honesty. Unlike you or me, perhaps, she never knows what her day will bring, but lives her life with joy, thankfulness, and a profound sense of purpose.
It wasn’t always that way.
Before Bethany’s birth, doctors told Kristin and Todd that in addition to the chromosomal disorder, their baby had a serious, life-threatening heart defect. If the baby survived in utero, she would require open-heart surgery only available at a hospital across the state.
“Well, by a miracle, at thirty-four weeks, she did survive the emergency C-section,” Kristin says. Her nearly three-pound baby “came out pink and breathing on her own.” The severe heart defect seen on fetal echocardiograms had mysteriously vanished to the astonishment of her doctors.
But the situation became dire.
Over the next three months, Bethany coded and was revived during subsequent surgeries. By the time Kristin and her husband took Bethany home to a room outfitted more like a newborn intensive care unit, Kristin was on edge, suffering from post-traumatic stress disorder.
“I was trying to support our son while trying to keep her out of the hospital,” Kristin says. Sad, confused, and prone to panic attacks, she couldn’t function.
Kristin and her husband are faithful people, but the stress of caring for two very sick children took a toll, as did the grim diagnosis of Todd’s mother. Eighteen months after Bethany’s birth, Kristin’s mother-in-law died of Lou Gehrig’s disease. An anchor in her life was gone.
“My faith shattered,” Kristin remembers. “I couldn’t trust God anymore. I just couldn’t reconcile how God could let this happen to us.”
She fell into a very dark spiritual depression.
With help from a therapist, Todd, and others, Kristin started looking at her life through a different lens. She had a choice. “I chose to embrace the mystery and have faith. That decision turned it around for me,” she says. “I didn’t write this story. God wrote this story.”
Looking back, Kristin also acknowledges she’d made mistakes. Namely, she needed outside help caring for her two special-needs kids. Despite looking, she couldn’t find an in-home nurse, and was wary of accepting support from friends and acquaintances for fear they might infect her medically fragile children.
Consequently, Kristin did the job mostly alone, with support only from very close family members.
If she had a re-do, she would’ve accepted the help. In addition, she would’ve joined support groups, as her therapist suggested. “Had I just reached out, I could have avoided the depression and my story would have gone differently,” she says.
Kristin is making sure others don’t repeat her mistakes.
She began writing two blogs, Inspiring Words for the Journey and more recently, Special Needs Moms Blog. In addition, she’s writing a book about her experiences as a special-needs mom, and co-authoring another with her husband.
“I’m feeling I’m just now beginning to embrace my new life,” she says. “With my mental-health training, faith, and caregiving experiences, my passions have collided.” Her hope is she’ll empower others to embrace their journey and learn how to cope. “What a ministry this is.”
Do you know mothers and fathers who face similar challenges? Refer them to Kristin’s blogs. Perhaps they’ll benefit from her honest portrayal of raising special-needs children and gain insights into how to cope.
Thank you, Kristin, for letting me share.