Precerpt from Raising God's Rainbow Makers: Nurse Hotline

 

When all the kids were little, there was no lifeline. No safety net. No calm voice on the other end of a phone to help us sort out panic from emergency. If we called the ER, the answer was always the same, delivered in that flat, policy‑driven tone that never once considered the reality of our household:

“We can’t dispense medical advice over the phone. You’ll need to bring the child in.”

As if “bringing the child in” were as simple as grabbing a purse and car keys. As if we didn’t have three other children at home—one medically fragile, one medically complex, and one who was still learning to tie her shoes but was already being drafted into the role of second mama.

So when Doah stopped breathing, or Noelle’s shunt failed, or someone spiked a fever that didn’t look like a normal fever, off we went. Donnie driving. Me in the back seat, doing whatever triage was required. And Lizzie—regardless of age—gathering the others, settling them, babysitting with a competence that grew far too early and far too fast.

Those were the years when parenting felt like walking a tightrope without a net. Every decision was ours alone. Every crisis was ours alone. Every moment of “Is this bad enough to go?” was ours alone.

And then, decades later—almost quietly, almost without fanfare—something changed.

A nurse hotline appeared.

At first, it felt like a luxury. Then it felt like a miracle. Now, it feels like oxygen.

For the last five or six years, we’ve had access to a nurse who will actually talk to us. Who will listen. Who will explain. Who will help us gauge urgency instead of defaulting to “come in.” With rare‑disease kids like Doah and Noelle, the advice is still often, “You should go to the ER.” But now we know how fast we need to go. Now we understand why we’re going. Now we get a little education along the way.

And sometimes, that’s everything.

Of course, when Doah does his mannequin imitation—turning blue, forgetting to breathe, and thudding to the floor—we don’t call the nurse hotline. We call the ambulance. And, true to form, he remembers to breathe before the ambulance arrives, as if he simply needed the dramatic entrance to reset his system.

But even then, even in the chaos, the existence of that hotline changes the air in the room. It changes the atmosphere of our home. It changes the emotional weight of caregiving.

Because we are no longer alone.

We are no longer the only ones deciding in the dark. We are no longer the only ones interpreting symptoms, guessing at severity, or trying to determine whether this is a “wait and watch” moment or a “grab your shoes and go” moment.

The nurse hotline doesn’t erase the emergencies. It doesn’t erase the rare diseases. It doesn’t erase the decades of vigilance that shaped us.

But it does something almost as important.

It lets us breathe.

It lets us feel held.

It lets us raise God’s rainbow makers with the knowledge that someone—somewhere—is willing to pick up the phone and walk with us through the storm.

And after so many years of doing it alone, that small mercy feels enormous.

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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