A Rare Disease Leap Day

Four years ago, on Leap Day 2012, we were completely unaware of Adelaide’s issues. She slept well, nursed well, and she seemed, well, perfectly sweet and content.

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We were still months away from our first MRI and almost a year away from hearing the words bilateral frontal polymicrogyria, thinning corpus callosum, colpocephaly, and so many other terms. She was just a happy baby who seemed uninterested in reaching milestones. Took things slowly and was the opposite of Big Brother in almost every way. We called her laid back. But she was actually unable to cross items off the checklist. We didn’t know that she couldn’t see much of anything around her. Nor hear footsteps.

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I forgave myself a long time ago for not noticing all the things that became obvious over time. Motherhood is an art, not a science. And special needs mothering requires daily grace. You can’t ask the what-ifs and stay sane. The two rarely go hand in hand.

Four years later, on Leap Day 2016, there is still so much we don’t know. We don’t know how her brain came to be this way. We don’t know what she will be able to do in the future. And even though there is no cure for Adelaide, we have hope. Hope that she continues to make progress.

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Traditionally, we wear jeans on Rare Disease Day. And we encourage others to wear jeans and talk about genes.

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Adelaide peed through three pairs of jeans and ended up in pajamas. But she’s always done things her own way…even before she was labeled rare.

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3 thoughts on “A Rare Disease Leap Day

  1. CFeather says:

    She looks so . . . wise, I think I want to say. And so happy too! She is just beautiful. I am always praying for progress for her, and strength and perseverance for each day for you and your family. God is there as your fortress to run to. . . I know you know that. . .

  2. […] children. Since I put my dad in prison. Since my dad-in-law died. Since Adelaide was diagnosed as being undiagnosable. Had I not raised my hands and danced around and screamed to, and at, God in the last three plus […]

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