This blog was written by Emily Wallis on Sanfilippo News. She has written many blogs about her experience as a Sanfilippo sibling and I would encourage you to read more.
Jan. 1 always brings up difficult feelings for me. Even before Sanfilippo syndrome entered our lives, New Year’s was a holiday for reflection — which isn’t necessarily an easy thing to process. Each year, thoughts about what the coming year has in store and what next Jan. 1 will look like flood my mind.
Sure, these are normal feelings. But Abby’s Sanfilippo diagnosis added weight to this holiday. Thoughts about the coming year became more than what job I would have or who I would be dating at the end of the year. It became a matter of, “What will my sister be able to do by then, and will she still be here?”
It’s a terrifying, heavy thought that shouldn’t have to cross anyone’s mind.
But that’s what it’s like, living with a sibling with a terminal illness. No barriers can keep those thoughts out of your head during the holiday season because they are your reality.
My reality is spending Christmas Eve at home. I can’t go to my favorite church service of the year because my parents must attend, and someone has to watch Abby. It’s realizing at random moments during Christmas Day, among the laughter and smiles, that something could be very different next Christmas. It’s understanding that one Christmas Day, our family will be incomplete.
These contemplations of the future are difficult to process, but I would be remiss not to mention my family and friends and my faith.
It’s easy to fall victim to the gravity of these thoughts by locking away any efforts to combat them. But the people in my life push me away from that dark state. They keep the joy in what could be a season of anxiety and sadness about my future. It’s hard to allow difficult feelings to persist when you have people fighting for your happiness.
The same goes for the role that my faith plays during the holiday season. For me, the phrase seen on car bumpers, “Keep the Christ in Christmas,” surpasses the literal, intended meaning. Keeping Christ in Christmas — and all holidays — is about comfort.
It’s easy to succumb to scary thoughts about the future, especially when many people in your life can’t relate. As I do with many of the emotions that come with Abby’s disease, I rely on my faith to learn trust and joy and recognize that it will be OK.
The holiday season can be difficult, but I invite you to reflect on your life as 2020 begins. Contemplation can bring plenty of anxiety and thoughts that are difficult to process. But more importantly, it can help you to love deeper, find joy, and appreciate what is in front of you.
What happens when the siblings of kids with the same terminal illness meet? I can say from experience, it’s awesome. No matter your age or interests, you immediately become best friends. At this year’s MPS Conference, I had the opportunity to meet several siblings. I didn’t get to… Read More