Precerpt from Raising God's Rainbow Makers: To Sue or What?
When Doah finally emerged from those first three dramatic years—doctors trying to gain custody so they could force procedures we knew were dangerous (and his pediatrician’s research confirmed it), stealing him out of the hospital to save him, coping with trachs and plugs and clinical deaths and daily CPR—we finally had a moment to look around and take stock. That winter, eleven other children with tracheotomies at that same hospital had died. Only two survived: Doah, because we fought for him, and Peter, an older child who had already lived with a trach for ten years.
We knew, with a cold clarity, that if we had not been tenacious—if we had not researched, questioned, challenged, and sought alternatives—Doah would have been one of the eleven.
And we wanted the hospital held responsible.
We consulted a lawyer. He listened carefully, then leaned back and said something we did not expect: “A jury will struggle with the medical complexity. Doctors carry authority. They will be believed. What is it you really want?”
That answer was easy.
We wanted home apnea monitors to be available in our Pennsylvania town. We had one only because we had stolen Doah from the hospital and taken him to Boston, where a determined respiratory therapist found a rental monitor nearly 400 miles away—halfway across our very wide state. No family should have to go through that.
And we wanted no more trached children dying when they could be saved. We believed most of those eleven could have lived. Our proposal was simple:
Refer children to the specialists in Cincinnati, where we had taken Doah after Boston, or
Bring a Cincinnati-trained doctor to Pennsylvania.
The lawyer nodded. “Then, meet with the Chief of Staff,” he said. “Tell him exactly that.”
So we did.
The Chief of Staff looked nervous. He brought the head of finances with him, who looked even more nervous. The CoS began with an offer: all our hospital bills would be written off.
We thanked him, but said that wasn’t enough.
We wanted monitors. We wanted automatic referrals or a Cincinnati-trained doctor. We wanted children to live.
He hemmed and hawed, shuffled his feet, and promised to “think about it.”
Two weeks later, we received an invoice from the hospital marked PAID. No note. No explanation. No acknowledgment of our requests.
We assumed that was the end of it.
But three months later, our apnea monitor rental bill arrived—from a local office. I went there in person.
“Why are you here?” I asked. “Why not still halfway across the state?”
The clerk shrugged. “We’ve had so many requests from your hospital for monitors that it made sense to open a local branch.”
I said nothing, but inside I felt something shift.
About a month after that, Peter’s mother called, breathless with excitement. “The hospital has a new doctor on staff,” she said. “They brought him in from Cincinnati. He evaluated Peter. After ten years… he’s going to be decannulated. We’re finally going to be free.”
Ten years of someone watching Peter 24/7—mother, father, aunt, taking shifts because there was no home monitor. Ten years of fear. Ten years of exhaustion. And now, thanks to one doctor, one evaluation, one change in hospital policy, their lives were opening up again.
I never told them about our meeting with the Chief of Staff. I didn’t need to. Their joy was enough. Their freedom was enough. And in that quiet, private way that justice sometimes arrives, the actions we fought for brought consolation—not only to us, but to families who would never know why their world had suddenly become safer.
Book Description:
Raising God's Rainbow Makers
A Family Memoir of Grace, Grit, and Growing Up Different
What happens when a military family welcomes four children—each with wildly different needs—into a world not always built to support them?
In Raising God’s Rainbow Makers, one mother shares the remarkable journey of raising two children with complex disabilities—one with spina bifida, one with CHARGE Syndrome—and two intellectually gifted children, all born in different states during years of military life. Through medical crises, educational challenges, and societal roadblocks (both intentional and unintentional), this honest and inspiring memoir tells the story of how one family built a life of strength, compassion, and resilience.
With warmth and unflinching honesty, the author reflects on emergency surgeries, IEP battles, unexpected victories, and the fierce sibling bonds that formed in the face of it all. The children—now grown—bear witness to the power of support, faith, and never giving up.
This is not just a story of survival. It is a celebration of difference, a chronicle of hope, and a powerful testament to what love and determination can build when the world says "impossible."
Keywords:
Parenting memoir; Special needs parenting; Raising children with disabilities; Military family life; Family resilience; Inspirational family story; Faith-based memoir; Coping with medical challenges; Sibling support stories; Gifted children; Spina bifida; CHARGE Syndrome; Hydrocephalus; Congenital disabilities; Complex medical needs; Pediatric neurosurgery; IEP and special education; Gifted education; Educational advocacy; Inclusive education; Hope and healing; Courage and strength; Love and perseverance; Raising different children; Disability acceptance; Parenting through adversity; Overcoming barriers; Finding joy in hardship; Special needs journey; Family unity and support; For parents of disabled children; For parents of gifted children; For educators and therapists; Christian parenting memoir; For families facing rare diagnoses; Real-life parenting stories; Memoirs about raising children; Stories of medical miracles
For more posts about Elizabeth and her books, click HERE.
Read more stories -- and photos -- about the Mahlou family in the blog (no longer maintained), Clan of Mahlou.
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