A new year brings uncertainty for Sanfilippo families
Instead of contemplating possibilities, I try to focus on the present
Starting a new year is exciting. It’s a time of anticipating possibilities, potential, and new beginnings. Christmas is behind us, and we start over. All the hastiness of the holiday season has slowed down, and we now contemplate what the new year will bring.
During the holidays, there is an unspoken expectation for everyone to be joyful, often to an unrealistic degree. There is so much commercialism that creates pressure to buy things to make us happy. By the time the holiday season is over, I am happy to see it end.
Facing difficult questions
I love the minimalism of January compared with the flurry of activities and excitement that accompanies November and December. It involves living simply, with fewer distractions, less “fluffiness,” and more reality. However, there’s a downside to this simpler time: It allows a lot of time to think. When you have a child with a terminal illness, this usually involves depressing thoughts.
My 28-year-old daughter, Abby, has a rare, terminal disease called Sanfilippo syndrome. It’s sometimes called childhood Alzheimer’s or dementia because the diseases present very similarly. Abby used to speak in full sentences and now has only a handful of words left. She used to participate in Special Olympics and taekwondo, and now she’s so unstable on her feet that she needs help getting around the house. She used to be independent and able to do many things on her own. Now she fully relies on me, my husband, and our caregivers.
Knowing Abby’s condition is only getting worse with time makes it difficult to be positive about a new year. Is this the year she will become completely dependent on a wheelchair? Will she begin having more seizures? Will she start having crying fits like other Sanfilippo children? Will she be in pain? There are so many questions to contemplate.
Staying positive and present
I try to maintain a positive outlook, despite Abby’s diagnosis. Being sad about things doesn’t serve Abby or anyone around me. Also, I think Abby probably senses it when people around her are sad or upset, and I don’t want to contribute to that. Abby is upbeat and happy a lot of the time, and she is quite infectious, so it’s difficult to be down around her.
Since Abby’s diagnosis, I’ve intentionally tried to be present more and appreciate every small thing as it happens. It sounds so simple, but it takes effort because it doesn’t come naturally. It’s so easy to take things for granted. I recall thinking about this last Christmas while with family. I took in each moment and was silently thankful for each one.
Even though a new year brings the possibility of her health declining, I hope any decline is minimal. I don’t know how many years Abby has left here with us, but I pray that the time is happy and as painless as possible. I plan to use the simpler time of the new year to soak in the small moments with Abby.
Note: Sanfilippo News is strictly a news and information website about the syndrome. 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, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.