Roughly three years ago, I had seen two pink lines, but I did not yet realize that would turn out to mean two babies for us. I had never heard of Lissencephaly, Dandy Walker, or Polymicrogyria.  I didn’t know what a Corpus Callosum was or why it was important, and I had never heard of absent CSP.  Those things were rare and a need to understand them hadn’t crossed my path.

One of the first texts I sent, back on the day of our devastating ultrasound, was to an old friend turned doctor. I tried my best recap the few medical terms we were given.   I remember after a few questions, he replied with something along the lines of “you may want to start preparing yourself that things aren’t going to be what you planned”.

And I think that sums up rare life. It isn’t what you planned.  It isn’t what you expected.  You are encountering things that had never previously been on your path.

But rare is also beautiful, perhaps even because it is unexpected.  It is appreciated.  It is different.  It is unique.  It is its own path.  A road less traveled, but a beautiful journey all the same.

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