Diagnosis Day
If you’re reading this, there’s a decent chance you are a parent who has received a diagnosis for your child, maybe you’re still seeking a diagnosis, or perhaps you’re a provider who has witnessed families digest the news of a diagnosis. Whether you are remembering a certain moment, longing for that moment, or trying desperately to block the moment out of your mind, you are not alone. Within the disability community, I’ve heard the anniversary of a diagnosis referred to as: “D Day,” the day that I started to view my child differently, the doctor’s appointment when I was told my child would never be able to live alone, the date where our lives changed forever. The list of descriptions go on and on. Some of them may make us cringe, others make us smile, and many may make us cry. Whatever your experience was, that date is significant.
Every January 18th, my husband and I reminisce about the day we learned that our then five-month-old son, Will, had a rare genetic condition called Williams Syndrome. His cardiologist was the first to tell us that his heart condition looked like WS. The blood test results from his geneticist would later confirm that he was in fact missing a set of genes on the 7th chromosome, confirming the WS diagnosis.
We squeezed each other's hands so tightly and tears streamed down our faces. The immediate days and weeks that followed are sort of a blur, but I remember moments. I remember the moments when the anxiety and grief were so strong that I didn’t recognize myself. I also remember the moments when loved ones said or did the perfect thing to remind me that it was all going to be ok. He was going to be ok. We were going to be ok and we were going to figure out this new normal together.
It goes without saying that there were MANY moments in between before I really believed it was all going to be ok. I will forever be on this complicated journey filled with a roller coaster of emotions that began on January 18, 2017. HOWEVER, my husband and I decided that day that we would never let that date be a day to mourn. We would celebrate every 1/18 because William deserves to be celebrated. Because we want his sisters to grow up celebrating what makes our family unique, celebrating their own resilience as they manage the struggles of having a brother with a disability, and celebrating the differences in all people. We also just love a reason to celebrate :)
Soooo every 1/18, we have a pizza party in the Lenihan house. Little did we know when we established this tradition, that pizza would be one of the very few foods that Will likes to eat :). We spend time talking about what Williams Syndrome is and why it means that Will has “extraordinary gifts and unique challenges ” (williams-syndrome.org). It often ends with a dance party and we’re reminded of how far we’ve come since that diagnosis day. There is more joy in our lives than we ever could have imagined.
As Tulip continues to grow, I look forward to hearing all of your stories. What was the diagnosis experience like for you? How do you remember that date when it comes around each year? We have so much to learn from each other and it often starts with sharing memories of a diagnosis, so we hope you’ll share yours with us. It would be an honor.
