No two diagnosis days are the same. The day the phone rings with news of a diagnosis hits everyone differently, even among members of the same family.
I remember feeling two distinct emotions on my family’s diagnosis day. The clearest thing I remember is overwhelming guilt. It sat on my shoulders like a pile of weights. I also seemed to forget how to be happy, as if my happiness was frozen in time and I couldn’t get it back.
I’ve mentioned previously that I wasn’t the most loving sibling growing up. I felt frustrated with my sister, Abby, and even embarrassed much of the time. When the phone call confirmed her diagnosis of Sanfilippo syndrome, I thought about my relationship with her and the many times I hadn’t been the supportive, loving sister I knew I could be.
The chip on my shoulder caused immense pain and heartbreak. I didn’t think it would heal. The word “terminal” reminded me that Sanfilippo would be a lifelong fight. I felt like I was losing a battle that hadn’t even started yet.
I vividly recall driving to our church with my mom that night. I hadn’t cried yet. The guilt was so strong that to some extent, I felt as though I didn’t deserve to be as sad as everyone else.
Luckily, after the phone call, we went to a place of love. Most of the people at our church already knew what had happened. They are among our closest friends and prayer warriors. The support and love we experienced that night are inexpressible. We knew immediately after entering the room that we had an incredible community that wanted to be there for us.
That feeling has not left my heart since.
Despite knowing how much support was available to us, I remember asking myself, “How in the world am I going to beat this?” I was certain the guilt would eat me alive. Sure, I had the best people in the world around me, but I didn’t believe it would be enough.
Overwhelming sadness and guilt are the first emotions that come to mind when thinking about Abby’s diagnosis day, but it’s equally important to note the other feelings that countered the pain. I wish I could say I went to sleep that night knowing I would get through it, but that isn’t true. I spent many nights crying, being angry, and questioning not only my faith in God but also my faith in myself.
I’ll explore my relationship with faith in a future column, but to summarize, it took me a long time to experience the beautiful inner peace that I live with today.
So many aspects of my life today stemmed from Abby’s diagnosis day. I can’t wait to continue sharing those parts of my life with you.
Note: Sanfilippo News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.