Fourteen years ago, I remember taking my son home from the NICU.
The way the world currently supports disabled children seems, at times, to be a misuse of the word “resilience”. Somehow because you’re this “superhero” parent, it felt like many believed I could just call on more strength to endure gaps in a variety of systems – be it health, education and whatnot. As I see it, the result of all this added pressure greatly affects the overall health of parents, because they are chronically stressed.
I wrote about high-priced drugs for years. Then my toddler needed one.
Anakinra is expensive — on average, private health plans pay about $4,000 a month for it — so we needed to get approval before it would be covered....
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