The End of "Wait + See"
“A diagnosis is not a prognosis,” a wise doctor once said to me, as I was deep in panic about what Flynn’s life would be like. Over time, it became my mantra and it comforted me as we were transferred from specialist to specialist. “A diagnosis is not a prognosis,” I would repeat to myself often. After countless appointments and tests, I grew comfortable with the labels being thrown onto the table and gained medical knowledge, preparing myself for the day that we got the answers we were looking for. I knew that giving a name to symptoms wouldn’t change who my child was, it would just help us with treatment, open doors for necessary programs, and allow us to gain insight for what our future may look like. I was confident. I was trusting my instincts and pushing for answers, being the advocate I have been striving to be for his whole life.
On our long ride out of state to see our fourth neurologist, I repeated my mantra to myself over and over again, a diagnosis is not a prognosis. Over a year had gone by since Flynn’s abnormal MRI, and differing opinions had caused our family a lot of stress. To some, I was on a hunt for answers that didn’t exist, possibly Bigfoot or the Loch Ness Monster. I simply couldn’t settle for not knowing what I knew was there, I felt it in my gut, and it made me sick that we were losing time. It was time without proper medical care, adequate services, and countless other things that popped into my head when I was awake at 3am.
The waiting room was brightly colored and welcoming, and “Moana” was playing on the television. The ten-minute wait before getting into our room felt like days, but we smiled and enjoyed the time to sit and just be. I knew whatever came of that day, we would all be okay, but I didn’t know if I could handle another “wait and see.” That’s a land of helplessness that I lived in for far too long, and I could no longer watch my baby struggle and not know why or what to do. I was anxious for the outcome, but also for not knowing how hard I was going to have to fight.
When we got into our room and Flynn’s vitals were taken, it wasn’t long before the doctor came in. It was the first time in over a year that someone had taken the time to sit with us, listen to our history and concerns, and explain to us what we were seeing in the MRI and what that meant. I had read the report and seen the MRI knowing that it was abnormal, and through my own research knew what this could possibly mean. I was prepared and I knew, a diagnosis is not a prognosis.
“What you’re seeing right here is periventricular leukomalacia.” Periventricular Leukomalacia (PVL) is a type of brain injury that involves the death of brain tissue around the ventricles. The damage creates "holes" in the brain.
“The injury that were seeing, along with the concerns and symptoms would classify underneath the diagnosis of cerebral palsy.” Cerebral Palsy (CP) is a term that refers to disorders affecting a person’s ability to move. It is due to damage to the developing brain either during pregnancy or shortly after birth.
In those first moments, I felt vindicated, as the results matched my concerns and my careful and tedious research. My gut did not steer me wrong, and I was relieved to finally know what to call this – this “thing” that had appeared into our lives amidst missed and delayed milestones and struggles in all areas. I felt like, for the first time in years, I took a breath that filled my lungs. That night, I slept through until the morning.
The next morning, however, I felt exhausted. I felt overwhelmed, scared, and panicked by this new thing that I did not understand. I felt like I was starting over. I felt like the community that I found through our journey with prematurity was no longer mine to be a part of. I struggled through my workday, my mind occupied with a sudden list of things to do, one that actually did accumulate overnight. We all know that the world doesn’t stop turning and I wasn’t allowed the “turnaround” time that I seemed to need. For the first time in my life, that I can remember, I admitted defeat. I took leave from work to allow myself to be broken before putting all of the pieces back in their new places.
Someday, Flynn will tell his own story in his own way. His story is not yet written and is not mine to tell. What does this mean for our family? There are a lot of unknowns, but what I do know is that Flynn has woken up to seize the day every day of his life and this diagnosis hasn’t changed a thing. He knows no bounds and has taught me the important lesson of how and why to not set limits, not for myself and certainly not for others.
I am still stumbling through the beginning stages of my new role. I’ll find my way and start a new narrative – I did it before and I can do it again. We all become what we need to be.
Disability comes with judgement. It comes with the stares, the comments, the looks. It comes with the hard days. We experienced all of this even before this defining appointment. The days, both good and bad, also end with family, and we are capable of tackling those hard times. And it’s important to share our story, so that everyone knows the face behind the disability. We need to say it out loud. This makes inclusion easier, and when inclusion happens, the judgement stops. When you add kindness, the hard days aren’t as hard anymore.
After all, a diagnosis is not a prognosis and now I know this for sure.