It all seems so far away. As much as I didn’t want to leave the Mayo Clinic, it now seems distant. It seems like a hazy dream from another life. A few weeks ago, John was giving Savannah a piggyback. They rounded the banister at the bottom of the stairs. For a moment, a brief moment, they paused. Savannah looked at me. Her smile was massive and her laughter vivacious. The words flittered through my mind before I could stop them. “This is not the smile of a dying child. It is not the laugh of one. It can’t be.” By the time the words had left me, John and Savannah had vanished up the stairs.
Two test results have come in that open wider the possibility that we are not looking at NCP. If the NCP test comes back negative, then Mayo-grown DNA will be sent to Baylor for advanced mitochondrial testing. The various types of mitochondrial diseases are expansive.
While test results were flooding in negative, we were settling back into normalcy: church, speech camp, sprinklers. We’ve played and fought and tickled. Normal family life. The difference is in the hugs. I hug her more. I hug her tighter. I inhale deeper. I want to breathe her in. I want to keep her inside me: her breath, her scent, her skin, her laughter.
It took two weeks for me to find the nerve to download Skype to my phone. Now that time has run out, I will have to create an account and wait for Dr. R’s message to set up a time to virtually meet and receive what news she brings.