This piece is by Stefanie Boyce, mother of Ellie, Jayden, & Brooklyn. Jayden & Brooklyn passed away due to Sanfilippo Syndrome and Ellie is six years old, unaffected, and coping with the loss of her brother and sister.
Your face changes when you ask me how Ellie is doing.
I’m not sure if it’s because she’s so young, because it’s the easiest question to ask out of a sea of difficult ones, or because you are generally curious. How does a little six-year-old as bright and full of life as Ellie handle her brother and sister dying?
Maybe it’s easier for us both to focus on her.
I answer and I’m genuinely glad you asked. I usually say she’s grieving well. She’s sad and happy. Lonely and loving the extra attention. Lucky for us, she hasn’t asked us for a dog yet. She has tough moments and grateful moments, most of the time they are one and the same.
She sees a counselor at school. Many times it starts with tears or her saying she misses me.
She’s hypersensitive about making mistakes. So much so, she tells me sometimes she doesn’t want to go to school because she’s afraid to say or do the wrong thing and hurt someone’s feelings.
She draws a lot and recently began writing about her feelings. It started with rainbows and stick figures of JJ and Beeba, and now has turned into real words on her iPad. I overheard her “typing” using the microphone the other day. “It’s hard losing your brother and sister…” it reads.
She’s talking to me. She’s crying here and there —among the laughter and giggles, of course.
She talks to J and B and smells their things, just like we do.
And one of my favorite things she came up with is her coping closet. I have no home for my vacuum now, but I have a home for her feelings. It’s full of items that help her. Some she made at JourneyCare Camp Courage, a bereavement camp she attended last summer for kids. Stuff like a jar filled with glitter she can shake, a squeeze ball she can squeeze, and a courage lion she can snuggle. She has some things people gave us as gifts to remember J and B. A snow globe that plays amazing grace, willow tree statues of a brother and sister, letters she painted JBE. She’s hung their pictures and artwork she made, and it all twinkles in purple hearts.
So how is Ellie? Brave. Courageously facing her grief honestly and beautifully. She’s grieving well.
I couldn’t be prouder as she leads us all.
This blog is by Chloey Rudy, an 8th grader that I met while competing at the Florida Future Problem Solving competition in March. While many people were interested in hearing about my project, Chloey had a special connection. After telling her about the website, she shared her experiences as a… Read More
Yesterday, the Cure Sanfilippo Foundation launched an awareness campaign about my dog, Henry, and his relationship with Blair. My sister, Blair, and Henry were best friends and he misses her so much ever since she passed away due to Sanfilippo in 2017. Learn more about their one of a kind bond in this video and share to raise awareness for Sanfilippo Syndrome. Read More