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Showing posts with the label advocacy

The Courage of Living After Exposure to Agent Orange

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Courage is usually described in battlefield terms — the charge forward, the split‑second decision, the willingness to risk one’s life. But for veterans exposed to Agent Orange, courage took on a different shape. It became a long, quiet practice: the courage to live with uncertainty, to face diagnoses that arrived decades after service, and to keep building a life even when the future felt fragile. 1. The Courage of Knowing What Might Come For many veterans, the first act of courage was simply absorbing the truth. Learning that a chemical they barely noticed in Vietnam could cause cancer, heart disease, neuropathy, or Parkinsonism required a kind of emotional steadiness that few people ever need to summon. It meant living with the knowledge that: bad news could arrive at any time, symptoms might appear without warning, and the body might carry a danger planted years earlier. This is not fearlessness. It is the courage of continuing anyway — of going to work, raising children, paying bi...

Precerpt from Raising God's Rainbow Makers: Doah's Prognosis

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  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 ...

Precerpt from Raising God's Rainbow Makers: Lizzie vs the Red Cross

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  Doah’s tracheotomy changed everything. With that tiny tube in place, he could finally breathe more easily and more continuously. Our world narrowed to one primary concern: keeping the airway clear. Plugs were our nemesis, but I learned to manage them, and for a while, that was enough. Then came the day he decannulated himself—far too early, far too suddenly, and entirely by accident. I’ve written about that moment before: the shock, the scramble, the impossible calm that mothers somehow summon when the stakes are highest. Because he was able to breathe on his own, the doctor made the call not to re‑trach him. Instead, he looked at me with a seriousness that settled deep into my bones and said, “Keep your CPR skills sharp. You’re going to need them until he grows and the subglottic stenosis takes up less of his airway.” He was right. I used those skills more often than any mother should ever have to. The hardest part wasn’t the CPR itself. It was the fact that when Donnie was at w...