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.
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
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 flood my mind. Read More