· Normal is a dryer setting.

decannulation

Happy Mother’s Day

This post could easily be called “a look at our nearly three years of parenthood.” I know some moms who would not share this day with their husbands for their life, but thankfully Jessica is not like that. We both feel that we would not be as good separate. We would not be complete.

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Inchstones to you, milestones to me

Namine made progress in speech last night. As I was getting her out of her bath, drying her off and trying to get the all-too-hyper child into her pajamas, she said to me through shivers: “Haha, I ole!” (Papa, I’m cold!) Then she made a noise she’s never done intentionally: “Kuh!” I asked her if she was trying to say cold. “Uh huh. Kuh! Ole!” Even after some more practice with the hard C sound, she still separates the consonant from the rest of the word. But that’s okay. She only just learned to make the noise, after all.

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Embracing the storm

I actually meant to talk about this the other day. On Sunday night we had a crazy, windy, loud thunderstorm, and Namine could not sleep. But her inability to sleep was not due to fear of the storm; on the contrary, she loved it. Loved it. The constant patter of the rain – and patter somehow does not do the sound justice – and the flashes of lightning, the crashing of thunder, all of these things thrilled Namine to no end. Awake, sitting up in her bed, she laughed and clapped, her energy seemingly a direct proportion to the power of the storm itself. She did not go to sleep until the storm was over, close to midnight.

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Taking a deep breath

Of all the things that we fear above all else, as parents of a post-trach child, is repiratory illness. Pneumonia can be deadly to any child, but if a post-trach child gets it, the most likely end result is a re-traching. (My spell checker is having fits at those sentences, but it also doesn’t think tracheostomy is a word, so to heck with what it thinks.) Namine has a slight cough; she has had it for a few days now, and we’re not sure what’s going on. It’s not common enough to take her in to the ER, but it raises its head often enough to remind us that it’s still there.

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Coincidence or providence?

Instead of doing one of those “year in review” posts, I’m going to talk about something else. Often, when we tell Namine’s story, the response is pity of some kind. Another common response is “why?” Why should Namine have to suffer these things? What did she do to deserve such a life? What did we do to cause her such a beginning? Or is she merely the victim of random happenstance, the living evidence of life’s cruel injustices? I suggest a third alternative: Namine did not just happen to take this shape; but she was made this way. To put it perhaps a different way, she was designed, with such precision and deliberation that this is how she was meant to be.

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