When my son could barely walk, I discovered him pretending to throw up in a stack of pink bins in the hospital. He’d witnessed his sister using those containers for just that purpose so many times. Even at that young age, he had had plenty of experience with the dirty, messy side of the hospital. His older sister had a brain tumor, so he was in and out of the hospital all the time. And at that point, he just thought that’s what you did when you saw one of those buckets. It was his normal.
From the very start, Ben experienced hospital life. For example, there was the time I was nursing newborn Ben in Ellie’s hospital room. Suddenly, her anti seizure medication relaxed Ellie so much that she stopped breathing. The room filled with responding medical personnel. When they had Ellie stabilized, one of them surprised, said “oh, you are nursing!”
Honestly, it was easy to ignore Ben, he was so healthy and vibrant, compared to all Ellie’s medical issues. I mean how do you even compete physically with a brain tumor? When Ben was 4, or maybe 5, he gave it a really good try when he had 8 cavities, plus strep throat PLUS Lyme’s disease. THEN, he had an allergic reaction to the antibiotic he was on which left him polka dotted. I was fairly certain I would win “worst mom of the year” medal that year. Even right now they are competing as Ben asked me to tell a story about him, because somehow Ellie always sneaks her way into every Moth story I tell.
During another hospital stay, Ellie had had a major surgery. Ellie had been stuck in bed for a week, maybe longer recovering. These were particularly challenging stays with a toddler in tow, as there were so many many bright, exciting buttons, just begging to be pushed. Even though Ben was super young, just walking himself, he raced over to give his sister a huge excited hug, when he saw her trying to walk again, two physical therapists assisting her. It was shocking that someone so young could understand how momentous it was that she was walking again (or trying to).
And the last year of Ellie’s life, we were in and out of the PICU so many times, that Ben would pick her next room as we were departing, he was already anticipating the next stay, because he knew we would be back.
The last few months, things became increasingly smelly and dirty, we were dealing with any and all bodily fluids you could imagine. I knew if Ben saw or smelled anything that was happening in Ellie’s room, he would immediately start throwing up himself. I tried my best to protect him from seeing and experiencing what was happening in there, for his sake, as well as mine (otherwise, I’d have TWO messes to clean up).
Ben was 5 when his sister passed away. At the end, he was this energetic little boy who would run into Ellie’s room and just scare the daylights out of her. She would scream upon his arrival, not expecting his visit. At the time
I thought of him as all caps BEN! With an exclamation point. I desperately wanted him to remember how much Ellie loved him and not just her screaming for him to leave her room. I wanted Ben to remember how Ellie always called him her best friend and how lucky she was to get to have a brother, whom she lived with, as her best friend. How convenient is that? And I realized after Ellie died that the reason Ben’s favorite letter was “E” was because it started his sister’s name.
Ben is now in Middle School, an age Ellie never reached. Whenever there is a concert at school, it is always a bit shocking seeing all of Ben's classmates now, older than they are in my head. And every time I walk in and feel weepy, and just cross my fingers they will play a sad piece that I can cry along to. A song so sad, I could look around me in astonishment to anyone NOT crying because, what are you a robot? Every time, as I walk in to find a seat, Ben will spot me and start waving his hand wildly. Instead of pretending he does not have parents, like his classmates, he just full on owns it. It always makes my heart soar with love for his bravery and willingness to be who he is regardless of who he is surrounded by. I once asked him how having Ellie as a sister impacted him, he said he felt like it made him kinder. I have to agree, he has excelled in the kindness department.
Last week, I volunteered for the Middle School. One of the teachers stormed out, upset by a student. Because apparently some of those middle schoolers can be real a-holes (I’m quoting here). I offered her water, because that is recommended as helpful in any situation. We started chatting and she asked who I was, and as soon as I said, "Ben Kennedy's mom", her whole face lit up. It was as if just hearing his name, made her feel as equally happy as she'd felt unhappy just moments before. Which, of course, made me tear up. That guy, somehow, has found a way to shine and jed (joy spread as Ellie would say) even in Middle School. Somehow he was able to take all the messy, dirty, chaotic, neglectful parts of
