A Diagnosis Gives Us a Guidebook


My son was diagnosed today.

Our son’s second home was the Children’s Hospital before he was even born. Due to a number of his anomalies, specialties were a part of his birth history, one being Genetics. There’s nothing like a doctor coming in and picking apart all that is “wrong” with what they see with your child – eyes, ears, nose, chest. Having just had our son and the postpartum hormones a-racing, I was quite ready to pick out the doctor’s abnormal features, as well! Nevertheless, after all those tests and assessments, nothing was found.

Since moving a few times and seeing new specialists, we’ve been asked by multiple doctors… “Have you seen Genetics? Could all of his anomalies be linked to a syndrome?” I always want to reply with, “Well, you tell me,” but no one seemed to connect any dots that could lead to a diagnosis.

We’ve recently reached a children’s hospital whose team had a specific syndrome in mind when they saw Owen. After waiting seven weeks for the testing to come back, the results were in… he had the condition they’d thought.

I’m relieved. I’ve finally let go of the breath I didn’t know I was holding. My shoulders feel the release of the pent up stress of wondering and worrying. Now, my mind repeats, “He has this syndrome.” over and over again. Some of those mantras are with joy, some of those are with irritation. But I know that’s just the grief-feelers, and I need to let them in on the party, too. Even though the feelers will be shown the door shortly, they serve a purpose. They remind me my son is going to experience the world differently just as much as the world will experience him differently. And in understanding those feelers, my compassion, my worldview, my culture changes. My vision changes. I see answers. I see potential. I see perseverance. I see inclusion. I see a new world in my new glasses!

Having a diagnosis means we have a guidebook. We can be preventative. Proactive. Intentional. But let’s be truthful. A diagnosis also means feeling isolated. Resentful. Mournful. Having a diagnosis separates you from the “norm,” and that’s intimidating. Having this diagnosis will be something he will forever fight to not define him. But these answers clear a path for him, whether it be medically, academically, socially, or even in a community. He has something that can guide him to better life.

I’m consciously choosing for this diagnosis to not be devastating. I feel the grief that wants to take over. But I’m remembering a diagnosis will help him to be his best self.

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