In the rare disease world, think zebras not horses.

In the medical field, there is a saying that when you hear hoofbeats, think horses not zebras. This saying means that common illnesses/disease are more often going to be the answer to the symptoms a patient is having. It is much more probable that your cough is due to a viral illness than being caused by a rare pulmonary condition. We talk about incidence and prevalence of diseases because it matters, because it helps us narrow down our differential diagnoses. But sometimes the hoofbeats are, in fact, a sign of a zebra. Because of this saying, the rare disease world even recognizes the zebra as a mascot of sorts.

The answer with Elliot is hardly ever horses. It is rare for us to leave an appointment with definitive answers or even a positive report. It happens, but not as often as we'd like. I can’t even count how many times the words rare and unusual have been used in Elliot’s appointments. My husband has a very detail oriented mind, and at one point did the probability of Elliot having all the diagnoses he has and lets just say, the kid is rarer than one in a million.

Because we live in the zebra world, there's not as much research available for us or even Elliot's specialists to review. We don't get to have answers for what this disease will do to Elliot. On the bad days, this reality feels like those old depression commercials with a dark cloud looming in the background. Some days it's just one cloud and easy to ignore, and others is a whole damn thunderstorm raging above. Thunderstorm days aren't always the days we get bad news or learn about a new issue he is facing, sometimes they are just a normal day that just feels overwhelming.

Today is one of those thunderstorm days. With each lab or imaging study he has, I find myself wanting to see the word normal in the results. Today's results weren't what I was hoping for, the results contain a lot of medical jargon that describe Elliot's spinal abnormalities. I understand enough of the language to be worried, but not enough to know what the neurosurgeon will decide regarding the possibility of surgery. KidSPot called today wanting to schedule Elliot for an occupational therapy evaluation, just another reminder that Elliot's life and needs are complicated. Early intervention is best, but another therapy just seems daunting right now.

We are having to learn the balance of what we need to do for Elliot, what we'd like to do for Elliot, and what is recommended for Elliot. I know we won't always make the correct decisions, and we've even seen that his providers may not always make the right decision either. I'm learning that I have to become more comfortable with the ambiguity and being the zebra in a room full of horses.

I am thankful for so much with Elliot. I'm thankful that despite everything going on with his health, he is not acutely ill. I'm thankful that despite being developmentally delayed, that his developmental team doesn't believe we are looking at a global developmental disability or autism spectrum at this point. I'm thankful that Elliot has the absolute best disposition of any baby/toddler I know. I'm thankful that he brings me enough peace in our interactions, that I'm usually able to ignore the dark clouds that often surround my thoughts.

I think the biggest takeaway I've had from my experience parenting Elliot is that raising a child really does take a village, and every child's village is going to look a little different. For Elliot, his includes 16 providers at Vanderbilt, a great pediatrician, and various other therapy/service providers. But his also includes a great extended family and group of friends who cheer him on, pray for him/us, and help us feel a little lighter on the more difficult days.

For those of you with children who are facing a medically complex future, starting building your village. Don't go at it alone. And don't be afraid to lean on that village. We were never meant to face the world alone, we are much stronger together. Even though today feels hard, I'm choosing to believe that there are brighter days ahead. I truly believe that our thoughts have power, especially collectively. There is power in prayer, in sharing good vibes, and sending hopeful thoughts.