Precerpt from Raising God's Rainbow Makers: The Doctor Had No Answers for Doah

 


When the pediatrician met Doah for the first time, he paused longer than most doctors do. He examined, listened, measured, and then looked again—as if something in Doah’s face or posture had unsettled him. He told me to call him at six the next morning.

When I did, his voice was thick with exhaustion. “Have you been up all night?” I asked. “Yes,” he said. “I’ve been reading. I can’t find an answer.”

This was before the internet, when research meant paging through medical books under fluorescent light. He had been searching for an explanation—something that would account for why Doah “bothered” him. Not because of prematurity; Doah had weighed in at four pounds and seemed healthy enough. But something in his appearance, his bearing, his indefinable difference, had caught the doctor’s attention and refused to let go.

“I can’t find an answer,” he repeated. “Doah has dysmorphic features, simian creases, and the only thing that comes close—but still doesn’t fit—is Fetal Alcohol Syndrome.”

I tried to translate his clinical language into plain speech, half‑defensive, half‑bewildered. “So, in lay terms,” I said, “you’re telling me my baby is ugly, looks like a monkey, and I’m a drunk?”

We both laughed. What else was there to do?

No Answers, No Hope

All the specialists at Children’s Hospital were equally puzzled—and not particularly kind. They gave Doah a miserable prognosis: lucky if he makes his first birthday. Not knowing what else to do, they essentially washed their hands of him.

This was after we had stolen him from the hospital and taken him to Boston—then brought him back to Pennsylvania. We were desperate for help, but the medical world had no category for Doah. He was an anomaly, a question mark, a child who didn’t fit any known pattern.

When the Diagnosis Finally Existed

Two years later, a medical team discovered a complex of defects like Doah’s. They called it CHARGE Syndrome—a constellation of anomalies affecting the eyes, ears, heart, and other systems. Suddenly, there was a name for what had baffled everyone.

When Doah was twelve, CHARGE Syndrome was becoming known to a broader circle of the medical community, especially at research hospitals. By then, we had moved, and Doah had become a patient at Stanford University Hospital at the age of nine. Stanford was puzzled too—but they didn’t give up. They tested, probed, and marveled at how robust he was. Finally, at twelve, they diagnosed him with CHARGE Syndrome.

Looking Back

Now, as Doah approaches forty‑seven, I look back on those first few days of life—the frustration of a very good pediatrician who tried hard but could not figure it out—and I understand. He couldn’t diagnose Doah because the diagnosis didn’t yet exist.

But he really, really, really tried.

And sometimes, that effort—the willingness to stay up all night searching for answers that haven’t been written yet—is its own kind of grace.


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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