The invisible part of special-needs parenting is what makes it so tough
?What a life, huh"? a well-meaning stranger commented on my peacefully sleeping child in his car seat carrier.
I knew the correct answer was to smile and agree. To lament on what an easy existence my sweet baby was living. Eat-sleep-play repeat, right" Because that?s what the man saw. What he expected.
If I was honest, I would have said my little cutie pie?s life had been hell thus far. That my seemingly healthy nine-pound son had, in fact, almost died on his second day of life, had been in and out of surgery during his short time on the planet, and endured unimaginable pain.
That I was terrified of what his future would entail.
I would explain my fierce battle with the insurance company and hospital billing department, starting while my son was still in an Isolette on the top floor. While he was fighting for his life in the NICU, we got a bill in our mailbox for $80,000 one day and $11,000 the next, and that was just the first trickle. His claims were denied (but, thankfully, eventually covered) because he didn?t yet have an insurance card. Because he was a newborn. To this naive onlooker, I could have recalled how my baby howled after being refused nourishment time and time again, as I or his medical team fed him tortuously through a dropper while he craved to suckle, though his tiny body couldn?t manage to eat or poop naturally, at least not yet.
I didn?t though.
Because nobody wants to hear about that when they remark on the ?tough life? of a beautifully snooz...
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