Defining Desirable

The trip home was eventful. It was full of rainstorms and random traffic and carsickness and hotel rooms with a very relaxed definition of clean. It even consisted of a brief adventure involving a rogue Magellan giving false directions down mythical streets before abandoning us in its death, leaving us lost in South Chicago.

But all of that is really inconsequential. As much as I love my old mountains, as much as I love being immersed in trees, as much as I love raising my children proper and Southern, I couldn’t help longing for Minnesota. I wanted to be minutes away from some of the best doctors in the world. I wanted the call to meet with Dr R instead of the text to Skype, when an answer is found. I wanted to be as close as possible to the people exasperating every possibility for my daughter. I knew they were searching, even with us back home, but I wanted to be near them as they searched. Even if they brought only the worst possible news, there is a comfort the Mayo Clinic brings. There is comfort at having six tests scheduled and performed the day the doctor decides it’s needed. There is comfort that every doctor you see has already talked to every other doctor you’ve seen. There is comfort in the competency the drips from the walls and the chairs and the light fixtures. I know our local team is wonderful. I have no complaints. But at Mayo, when the results come back: today, tomorrow, next month, six months from now, I know action will be taken the day of or, if there is a snag, the day after. At home, our local team will have to find the specialist, research or talk with Dr R to find our course of action and then have to find where it can be done. Mayo has the specialists; they have the knowledge; they have the equipment and are ready for anything. And that is what we are waiting for . . . Anything.

The Mayo Clinic has this wonderful portal and App. Now that it is set up, I can log in on my phone and view all lab results as they come in, review notes from our visit, and message Savannah’s team. If we were there, I could refill prescriptions with that App, and it would send me reminders of appointments the doctors set up, including which building and tower. Now, when something definite comes up, Dr R will message me through the Mayo App and set up a time to Skype. (And the App is free. Free is always good.)

I’ve made a habit, or obsession, of checking Savannah’s labs daily. There’s no telling when something may come in. Yesterday, it did. There, amid a list of results, it stared back at me:

NMDA-R Ab CBA, Serum
Negative desirable.

Define desirable. I suppose for most people, it’s wonderful news that they don’t have a horrid disease causing their body to attack their brain, leading to memory lapses and psychosis. Most people don’t put their hope in a neurological illness that presents itself as a demon possession. But when it’s the best hope your child has. . . When you have to choose between a neurological demonic possession with a 70% recovery rate or a myriad of disorders that will slowly continue to strip your child away until all the glitter is gone, I find the Demon more desirable. It was one piercing blow straight through me, leaving behind a hole in my center where the future began to leak out, whistling and hissing like the life of a lost, rogue, deflating balloon.

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3 responses to “Defining Desirable

  • Theresa Borders

    Another good report! What a blessing.
    After all that y’all have been through, it’s good to know how much you respect and trust Savannah’s team of doctors at Mayo Clinic. They have such a good reputation and after reading your blog, I can see why. My prayers continue for our sweet princess. Please give her and Joseph a big hug for me.

  • Pat Westmoreland

    You words keep me reading but it is what is behind your words that make my eyes fill with tears. I see the words “negative” on a test that would bring joy if there wasn’t so many double jeopardies involved! Again although I know nothing about you my prayers are with you! You have the fierce heart of a true mother! Pat Westmoreland

  • Leslie Stanga

    Waiting, hoping and praying along with you, Elizabeth.

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