Precerpt from Raising God's Rainbow Makers: And Then They Became Adults
It just happened. Not overnight. I just seemed like it. All the rainbow makers had lived -- and become adults. Now what? As we were to find out, the answer to that question was on us.
We found out the Catch-22 of adult rare disease care. Pediatric teams were clearly trained and resourced for congenital complexity—but they discharged based on age, not need; typically, age 12. Sorry, Doah, they said, we just now have a diagnosis for you -- CHARGE Syndrome (a newly discovered syndrome), but you are a big boy now, about to be a teenager, so goodbye. At last, finally, we had a label, but no way ahead and no doctors. PCPs available in our area, of course, knew nothing about CHARGE, but they did their best to treat Doah, treating him like any other teenager and then young adults, and now aging adult.
Adult systems, we learned, are siloed and symptom-focused, often lacking interdisciplinary coordination or rare disease literacy. Clinicians fear liability or “not knowing”, so they defer or decline, even when you offer them a map. Patients become invisible—not because they’re rare, but because the system isn’t built to hold them. And there is a rare disease bias; when diseases are very complex, providers default to standard protocols, which for both our disabled rainbow makers can be life-threatening.
So, Doah was now ours, not only as he had always been but also in very new, nervous-making ways.
So was Noelle, although spina bifida is much more common and better known. Still, no PCP in our town would take her. Nor would any in any town around although she did have insurance. As an adult, the only place for her to get care was Clinica de Salud, a wonderful resource, but not one where doctors were knowledgeable about spina bifida. Her doctor there was an osteopath, not exactly on the mark.
Not one to let my rainbow makers languished. I searched for the best doctors I could find. Doah had become robust and therefore a talented father-son team was able to help him. The son was a PA and interested in anything anomalous. He spent time researching Doah's needs. When Doah needed a gastroenterologist, through he help of a friend, I connected with a stellar doctor, one who said, "Yes, I will take your son, but please give me time to become educated on CHARGE Syndrome; I need a month." Thanks to the CHARGE Syndrome Foundation, there was a place for him to start his education!
For Noelle, who, as a young adult was living on her own, I called the best PCP in her town. No, he said, he was unfamiliar with spina bifida and therefore would not take her. There was only one spina bifida clinic for adults in the entire northern part of the state, and it was three hours away. I did get a kind nurse there to give some guidance over the phone for looking ahead (I suppose she was not supposed to, but some people are just kind). So, for her, too I became the linkage among specialists that were assigned each time to ended up in the hospital for a different reason.
We very quickly realized that there was no legacy history for these rainbow makers. Major medical centers freeze, then eliminate records as time goes on. Fortunately, eventually, technology provided assistance. Donnie put up a web page for each of the rainbow makers with their medical histories that medical providers could access. And they both wore medic alert bracelets with the most important information (allergies, danger of intubation, etc.).
So, yes, Doah and Noelle are ours in many ways we never anticipated. And now, midlife, for their own health and safety, they have come home to live. And we get to enjoy their rainbows here!
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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