Precerpt from Raising God's Rainbow Makers: Ordinary Accidents, Potential Extraordinary Consequences

 

When Doah was about fifteen months old—still sporting his tracheotomy, still fragile in all the ways that made our life both vigilant and strangely normal—we decided to spend a warm January in Florida with Donny’s grandparents. They had not yet met any of the children, and Lizzie was already nearly nine. It was time. And Pittsburgh in January offered plenty of motivation to head south, long before the rest of Donny’s family began their annual retiree migrations.

So we packed up the car—three kids, medical supplies, catheters, suction equipment, diapers, toys, snacks, and the kind of determination only young parents with medically complex children can muster—and drove to Daytona Beach. Compared to the cross‑country hauls we would later make after moving to California, it wasn’t a long drive. But for a family with a child with spina bifida needing regular catheterization and a baby with a trach who required constant monitoring, it was long enough.

We arrived in good time, introduced grandparents to grandchildren, and settled into a rhythm of rest, warmth, and beach days. Daytona Beach is an unusual beach—smooth, flat, and firm enough that cars can park on it. The waves were gentle, the surf shallow, the whole place deceptively easy. Maybe we got too used to that ease. Maybe the universe decided we needed a reminder. Or maybe our “normal” simply never matched anyone else’s version of the word.

One afternoon, I dozed on the sand with Doah beside me while Donny watched the older kids splashing in the ankle‑deep surf. The waves had been predictable all week—slow, small, harmless. But the ocean has its own opinions.

A longer‑reaching wave slid in quietly, caught Doah’s tiny body, and rolled him. Then rolled him again. And again. Before I fully woke, the retreating tide had begun pulling him outward—not far, not dramatically, but far enough. And a baby with a trach has no margin for “a little water.”

Donny yelled. The cold splash of surf snapped me awake. I saw the rolling baby, the trach, the pull of the tide, and I ran. The ocean pulled fast. I ran faster. I grabbed him just as the water tried to take him one roll farther.

To anyone watching, it probably looked like a small, forgettable moment—a baby getting wet, a mother scooping him up. Nothing unusual. But Doah was not just any baby, and “getting some water” was not just getting some water. A teaspoon in the wrong place could have been catastrophic.

Thank God it ended well. But it was another reminder—one of many—that ordinary life for us always carried the potential for extraordinary, unwanted consequences. Our vigilance wasn’t anxiety. It was survival. And even on the gentlest beach, under the warmest sun, with the calmest waves, we never truly lived in the same world as the families around us.

We lived in a world where a single wave could change everything.

And we learned to run faster than the tide.

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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