I have had many turning points in my life. I often divide my existence into “before” and “after” my mom’s and sister’s diagnoses, but I experienced another transformation after those milestones.
Following the first diagnosis, my mom’s cancer went into remission, but the threat of metastasis loomed. I looked at my life and thought, “What’s next?”
In 2017, I had my answer. My mom’s cancer metastasized in April as my second-semester finals approached, and we received the test results that led to Abby’s diagnosis in August on the day I returned to college for my third semester. I felt broken and guilty after my sister’s diagnosis. I was angry at God. I thought, ‘Why us? Why would He put this on my family?’
I still struggle to describe my devastation at these junctures in my life. I compare the challenges I faced during that time to dealing with a virus-infected computer. When you shut down one virus, another pops up. This is what was happening in my head: Each time I successfully banished a bad thought, another would emerge. I cried a lot, threw things, hit my pillow, and had panic attacks, but my overriding emotion was homesickness.
Eventually, I reached a point when I realized that I couldn’t get through this state of anger and depression without God. I had tried to connect with Him for months without success. I was engulfed in relentless guilt, which posed a huge obstacle to my relationship with God. It took me a while to realize that I had already been forgiven for my past.
At the beginning of this year, I met with the Rev. Mark Brown, a family friend who had served as a priest at my church. I was in a difficult spot; I knew that I needed God, but I didn’t know how to bring Him into my life when I was overwhelmed with negative feelings.
After the meeting, I felt a sense of freedom. I was reminded that God recognized the loving sister inside me because He had created her.
I had finally made it to the “after” stage of my journey with faith. I felt God’s presence in everything I did, and for the first time in my life, I didn’t feel weighed down by guilt or anxiety.
When I arrived at that stage, I was surprised at my calmness and connectedness to God. My journey to faith began with the realization that I couldn’t move forward without Him. I can’t imagine now how it would feel to face my future without knowing that He is there, walking alongside me.
My journey with God has had its highs and lows, but I have maintained the ability to “Let Go and Let God.” I had many negative feelings about faith, particularly after the diagnoses. I was angry, had lost my trust in God, and didn’t accept that He was present in my life. I was in no state of mind to believe that God had His arms around me, comforting me, protecting me, and telling me that it would be OK.
When my family began our journey with Sanfilippo, I had no choice but to build connection and trust. My heartbreak led me to realize that He is there, He does love me, and He had forgiven me long before I forgave myself.
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.