Precerpt from Raising God's Rainbow Makers: Doah's Prognosis
I recently told a pulmonologist that Doah—now nearly forty‑seven—entered this world with a zero percent chance of survival stamped on his chart. That was the official medical verdict. The unofficial one was harsher: the doctors called me immature for refusing to accept that he would die. They insisted that hope was denial, that advocacy was naïveté, and that my unwillingness to surrender him to their predictions made me the problem.
Their solution was to remove him from me entirely. They tried to take custody so they could perform experimental procedures his own pediatrician warned were dangerous and unlikely to help in any meaningful way. The message was unmistakable: If you won’t give up on him, then we will take him from you so we can.
I did what any mother who knows her child better than a prognosis would do. I removed him from the hospital, gathered what little we had, and took him out of state. The doctors we found there were not optimistic either—but they were willing to think creatively, to try, to imagine a future for him even if they could not promise one. They treated him as a child, not a case study. They brought his rare constellation of anomalies to a regional medical conference, not to marvel at his fragility but to ask, What can we do for him?
CHARGE Syndrome wasn’t even a recognized diagnosis then. The earliest case in the literature appeared when Doah was two years old, and he was twelve before anyone finally named what he had been living with all along. His infancy was a mystery to most doctors, and because they could not explain him, they assumed he could not survive. They saw impossibility; he became possibility.
Today, he is robust—sturdy in body, steady in spirit, and still confounding every prediction ever made about him. When I told the pulmonologist his story, she shook her head in disbelief and said I should take him back to those doctors so they could see how wrong they were. Not out of spite, but for their edification—for the humility and hope it might give them.
“It’s a great idea,” I told her, “but I can’t.”
She looked puzzled until I added, “He has outlived every one of them. They are all gone now.”
There is a quiet holiness in that truth. The child they expected to bury has outlived the people who wrote his obituary before he had even taken a breath. The boy they dismissed as a lost cause became a man who keeps showing up, keeps breathing, keeps proving that statistics are not destiny and that God’s rainbow makers do not follow earthly timelines.
Doah’s life is not a miracle because it defied medicine. It is a miracle because it revealed medicine’s limits—and the boundless reach of love, persistence, and the refusal to surrender a child to anyone’s hopelessness.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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