How many times have we heard that earnest, utterly truthful statement from expectant parents who are asked if they want a boy or a girl? When two people say that all they want is a healthy baby, that is usually the extent of the wanting. Unless they themselves suffer from a chronic illness, parents who say this have an image in their heads of ten perfect fingers and toes, dappled cheeks and smooth skin and a lifetime of worries which, if examined closely, reveal themselves to be silly, fussy, and unrealistic. Few parents actually think through the litany of things which could go wrong. Few have reason.

Trite as it sounds, that was me, nine and a half years ago, waiting for my second daughter to be born. Grateful for a largely uncomplicated pregnancy, holding the pudgy hand of my totally healthy preschooler, I felt all the right things at all the right times. Like a made-for-tv movie, my cliche of a sweet life could have been shot with forboding music layered over the sunshine of those mid-summer days at the end of my pregnancy. As my husband and I folded laundry in the last week before Sammi was born, her big sister Ronni sleeping peacefully down the hall, we joked about how fleeting these quiet moments would become.

If you watched the movie in reverse, that would be a sick joke.

Sammi was born with her life force ahead of her, slapping us across the face over and over again, an unending warning against complacency and certainty and hubris. Life is never the same for people after they have children, but this was something far more than the loss of date nights and the thickening of waistlines. Sammi’s confounding, fluctuating ill health began hours before she was born and seldom let up. As we took on new identities as medical advocates and amateur diagnosticians, we were not given leave to lay down the mantle of parents. Every need — normal or otherwise —  required attending-to, and unlike diseases with clear diagnostic criteria, her illnesses were always idiopathic: not quite exactly like this thing, not quite exactly following that course.

She wasn’t a healthy baby.

Or a healthy toddler. Or preschooler. Or gradeschooler.

So what now? Now I write this blog — for me, hit over and over again in a fight to parent my children according to my instincts, and for you, who may be where I was and have been: alone in the dark, searching for someone who understood. If I understand even a piece of what you are experiencing, and if you’re anything like me, I’ll be glad to know you. I’ll lend words to this life, this deeply-felt, no-coasting life, this life without a healthy baby. Not everyone knows what that means, but I do.

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