Dancing in the Rain: Prologue

“Your daughter is flooding the operating room table with pee”

Those are the most unexpectedly beautiful words of my life.  I cannot remember the exact words my husband used to propose or even the vows he wrote himself and then cried through.  I can remember the elation and atmosphere on the occasions when I got my positive pregnancy test, when they found two hearts beats and when the ultrasound showed one set of girl parts and one set of boy parts.  The joy of those moments I will always remember but the words, the exact phrases, are somehow lost.

But not those beautiful words, delivered to me by my mom while I lay in a hospital bed fighting off nausea from the general anesthetic.   Although I was barely coherent from the pain and medications, the news that my kidney had just saved my 17 month old daughter’s life and enabled her to pee for the first time in 10 months was so exhilarating that those words were etched in my memory, but more significantly on my heart.

Then there are other words I never expected to hear but are now forever engrained in my life’s story.  A series of phrases really:  “an awful MRI,” “never walk, talk” “severely cognitively affected”, “choose to withdraw care”… a set of words that surely could not be being used to describe my precious blond haired smiling one year old son.  Words that surely belong only in nightmares or Lifetime movies but not in my world. These phrases over time became replaced with more palatable but no less emotive ones like “cerebral palsy” and “with a lot of therapies, maybe” But regardless of hard I try to forget them, the terrifying words from the day we found out are there jumping back into my consciousness uninvited and frequently.

A million years ago, or more accurately three, I never would have believed such big words, such unfathomable heartache, such miraculous joy could be a part of my ordinary life. I once had a typical life full of normal experiences headed for an expected future. Until the two tiniest most beautiful and complicated people entered it, far earlier than anticipated and brought with them a storm of the unexpected.  A storm that demolished my carefully constructed ordinary world.  And in its place, something far more beautiful, far more resilient and far more memorable is being built. Out of the rubble of my previous ordinary, extraordinary is being established.

And I realize I have a story to tell.  A story of heartache, and of hope.  A story of defeat, and a story of victory. A story of sadness but more significantly, a story of joy. Max and Addie’s story. Their extraordinary story.