This week, I want to shed some light on a special group of people who carry me through this trying and emotional life as a Sanfilippo sibling: my friends.
I didn’t know how my sister Abby’s diagnosis of Sanfilippo syndrome would affect my friendships. I was carrying a lot of resentment and anger toward the world and was scared of becoming a complainer.
My friends amazed me with their open arms and unconditional love. I was at college when Abby’s diagnosis was confirmed, and I remember feeling homesick. I leaned on my college friends a lot. They kept me sane and made sure I was OK.
My friends at home did the same thing from a distance. I will never be able to sufficiently express my gratitude for the check-in texts and the love they sent me despite their busy lives.
Sanfilippo has become the norm in my life and is a frequent topic of conversation. My friends know and love Abby, which is so important to me. With Abby’s diagnosis came a lot of weight. Some of those heavy emotions sit with me to this day, but the diagnosis also added an incredible burden to every relationship in my life.
My relationships boil down to one word: trust. I must trust that my friends will be kind to Abby. They must acknowledge her, talk to her even though she doesn’t respond, and treat her as they treat me.
Also, I must trust them with me! Life as a Sanfilippo sibling is hard. It’s emotional, infuriating, and overwhelming. I must trust that my friends will be there for me, both now and in the future. This goes for every connection I have, including romantic relationships.
I’ve always taken relationships too seriously. I’m the girl who will tell you her life story the day I meet you. I also want to know your life story the day I meet you! Even within my friendships, I probably take things too seriously (or personally), simply out of fear of losing one of my friends. The weight of Sanfilippo exacerbates that, which can be scary. Nowadays, I am more reserved when I first meet someone, due to fear.
Sanfilippo has made my friendships more meaningful. Yet it also has made me fearful of being unable to express my gratitude, of growing apart, or worst of all, of losing people. I can only hope that I will keep my friends in my life forever.
It is impossible to thank each friend that came to mind while writing this column. You know who you are, and I hope you know how much I love and appreciate 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.