MSI Press Blog

  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 th...

  Precerpt (excerpt from book prior to publication):  Raising God's Rainbow Makers  (Mahlou) Lizzie's Birth, part 1 Angel: Good morning, Lord. I see you looking down toward the earth with particular attention to a little town in Montana. Why? God: A little girl is about to be born. Angel: Why does that merit special attention? God: There will be a few complications in the birth: the doctor is out of town, and the doctor on duty has never handled these complications. Angel: But they are not that serious, right? He will manage them, right? God: Yes, of course, he will. I just want to provide a little guidance, give him a little sense of security, just in case. You know, this little girl is going to be the big sister of rainbow makers, and you know that My rainbow makers are very special to Me. I watch over them carefully. Angel: Yes, I do know that. But, wait, why are You now looking at me in that special way that always tells me that You want me to get involved, too. God: ...

  Precerpt (excerpt from book prior to publication):  Raising God's Rainbow Makers  (Mahlou) Naming the Rainbow 🌈 Raising God’s Rainbow Makers Names carry stories. Sometimes they arrive like heirlooms, passed down with love and legacy. Other times, they tumble in unexpectedly—through tears, toddler protests, or the joyful shout of a neighbor boy. For our four, each name came with its own twist of grace. Lizzie was easy. She was named after me and my mother. Isn’t that what you do with a first child? You reach back, honor the women who shaped you, and hope the name carries strength forward. Noelle was more complicated. Her original name was Anemone —until we told Lizzie. She burst into tears. “No, not that name!” she cried. “Why?” we asked. “Because I can’t say it!” So we gave her the chance to choose. Lizzie loves Christmas. She chose Noelle . We called the state and changed the birth certificate. Sometimes the best names come from the heart of a big sister. Shane be...

  What happens when the baby in the family occasionally “dies” or lives in constant danger of dying? The answer is surprisingly simple, because we witnessed it firsthand. They become eternally bonded—and exceptionally independent. Whenever Doah stopped breathing or slipped into a clinical death, Donnie and I were wholly absorbed with him. We would tear out of the driveway behind the ambulance, racing to the children’s hospital miles away. At home, nine‑year‑old Lizzie—old enough to babysit, but just barely—took command. She kept Shane and Noelle organized. She catheterized Noelle on schedule. She taught 23‑month‑old Shane to read and to follow along with her fourth‑grade lessons. No one told her he was too young, so he never knew he was. One day we heard him reading a book aloud… then another… then a stack of flash cards. The preschool we enrolled him in was equally stunned; overnight, they promoted him to first grade. This crucible of crisis created more than bonding. It forged in...