How is Ellie?


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.


Image for We Stay Home for Carter.

We Stay Home for Carter.

Due to the Coronavirus, many have been social distancing for weeks now. Staying home is much more critical for kids like Carter, who has Sanfilippo Syndrome. Here's how the Sarkar's lives have changed because of the Coronavirus - and why you should stay home for Carter. Read More

Image for Finding the Unity in Disability

Finding the Unity in Disability

If I don’t have a topic in mind when it’s time to write a column, I read articles. I look into the lives of other siblings of special needs individuals, delving into the struggles, pains, and joys of their respective experiences. From this, I usually find something that I can relate to in my own life, and I let the writing guide me to my own ideas. Read More

Have a story to share?