The Dirt on Ben

At last month's Moth, the topic was Dirt.  Here's the story I told, which I didn't feel went as well as I'd hope (I froze on stage), but I thought I'd share the story here.  Ben had asked me to tell a story about him (Ellie always seems to make it into my stories..)

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

Beauty Everywhere!

Zibbi became extremely upset when she discovered she would have to wear snowpants tomorrow to school.  She was concerned that everyone would "look at her".  I finally talked her down when I explained EVERYONE would be wearing snowpants (peer pressure already?!?!)  She then told me that her friend Eleanor had been wearing snow pants for awhile and that seemed really brave. 

We discussed how Ellie also did not enjoy wearing a winter coat.  How one year, on a bitterly cold day, I gave up and drove to the library with Ellie sans coat.  As we walked from the parking lot to the library door, a stranger yelled from her vehicle how it was too cold for Ellie not to have a coat.  Shortly after that, the "staff" came to live in our house and help out with the tasks Ellie hated.  There was "Camilla" who did coats.  Margarette did manicures.  When Ellie would explain all this to the hospital staff, they would look perplexed, until I explained that the entire staff looked surprisingly like Thom & myself, although they had different accents.  As I repeatedly explain, we aren't that branch of the Kennedys. 

Then Zibbi decided she was going to put all of the clothes we talked about on and go play in the back yard.  As she was slipping on her boots, she said, "Damn sock keeps slipping."  Makes me miss her "bammit" stage, seems so quaint, when she didn't realize that word started with a "d".  She went outside specifically to create snow angels.  At one point, she wanted me to join her outside, but I hadn't had the chance to get dressed yet, so I declined.  To convince me, Zibbi explained, "There's beauty everywhere".  And I thought wow, so true.  And I'm STILL not coming out there. 

Excitement Levels Dropping

Last year at a holiday party, we were given a holiday bingo set.  Zibbi LOVES playing this game.  I am

all set for retirement, with all this practice.  Recently, we ran across another BINGO set at St. Vinny's

with letters, which seemed perfect for helping to learn the alphabet.  After playing it once, we ran into a bit of trouble the second game as the markers kept falling off of the card.  Finally, I suggested we put the cards away for now and try again another time.  Zibbi quickly agreed.  Then she said with a sad sigh, "I'm just going to sit here and not feel excited about anything." 

A few weeks ago, at dinner time, Zibbi stood up from the table and said, "I'm shaking my butt for good luck," which, of course, elicited a great deal of laughter.  So today, I as I cleaned the kitchen, I tried the same routine.  Zibbi, straight faced, told me it wasn't very funny.  I inquired if the humor was gone because it is no longer surprising.  She said no, it was because the joke didn't work with pant

pockets. 

Namedropping...

I was very nervous about Ben starting Middle School.  I'd heard rumors that Middle School is now more challenging socially than even High School.  Plus, I know from previous experiences with Ben how challenging change can be for him.  So imagine my surprise and delight when he started O'Keeffe Middle School and just flourished.  When Zibbi and I would happen to pass the school, I'd sometimes spot the gym teachers outside.  When I'd chat with them, they would just say what a great guy Ben is.  (Our friend, Brittany who is an 8th grade teacher, explained that when you work in Middle School, you really have to seek out allies.)  They told me that if Ben was in class, everything was better. And when I attended his open house in the fall, I would walk into the room, trying to be my sparkliest best to his teachers.  But when BEN would walk into the room, their faces would light up.  I thought they might just elbow me out of the way to get to him. 

Whenever there is a concert at school, it is always a bit shocking.  All of Ben's classmates are now older than Ellie ever was.  And I go into the gymnasium, picturing 3rd-4th grade looking students and instead they are 7th graders!  Every time, I imagine I won't have the experience this time.  And every time I walk in and feel teary, 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.

Yesterday I volunteered at the first ever Future Quest.  All Dane County middle schools were invited to the Convention Center for exhibits displaying different career paths.  As I was chatting up the coordinator of my section, a teacher came out of the exhibition hall upset.  She asked if we could not be nice to her for a second (I am assuming this was because she didn't want to cry more).  I offered her water, because that is recommended as helpful in any situation.  She left the building and came back a few minutes later.  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.  (It reminded me of how we used to suggest at the hospital that everyone namedrop how we were the "Kennedys", if that would help get things accomplished until we realized at the hospital it is the name "Iskandar" that gets things done...).  That guy, somehow, has found a way to shine and jed (joy spread) even in Middle School.  If he can do that, he can do anything.

Screwed

Yesterday, Zibbi came into the bathroom when I was getting ready for the day.  She showed me a small black tool in her hand.  She explained to me that she had discovered that the tool was a screwdriver and, showing me the other hand, she had removed a screw on her own.  I was a little startled, firstly that she knew what this little black tool was.  Secondly, I expressed to Zibbi my concern that screws are used to hold things together, so if they are removed, things can and will fall apart.  She reassured me that she had not removed the screw from a wall.  I immediately thought how this could be a new game for the whole family--who can find the missing screw?  I keep imagining that one of these days, one of us will sit down on chair that suddenly bursts apart because of a missing screw, or a table that falls to the floor unexpectedly. 

Later, Zibbi started to sing.  And because my lifelong dream is for life to emulate a great musical, I of course joined in.  Zibbi very politely asked me to please stop.  Then she asked if I noticed how nicely she'd asked me not to sing.  For example, she explained, she didn't say my singing stop horrible and I should stop immediately.  Hhmm.  I think the asking nicely might have been erased by the explaining what she could have said. 

Poon

Before Zibbi started 4K, we discussed the prospect repeatedly.  One day, we were sitting at the dining room table when she suddenly looked panic stricken.  She wondered allowed how she would survive 4K if the teachers could not understand when she says "poon" because she can't say her "s"'s.  Ben reassured her by letting her know they only have sporks at school.  Which made me MORE nervous, wondering how confused the teachers would be if Zibbi kept asking for "pork" every day.

The agony of misplacing a phone

At dinner, Zibbi suddenly put her head in her hand and exclaimed, "Oh no!" She was then momentarily distracted from her thought as she noticed green marker on her hand.  She continued to tell us that she'd forgotten the car phone in the van (a toy phone that had the Cars movie characters on it, just to clarify.)  She finished this pronouncement with a "Bammit".  Her first time trying out this word.  She didn't really know what it meant, but was stunned when the entire table burst into laughter at her obvious turmoil.  She might be watching too many shows with Ben and I that are giving her a whole new vocabulary.  I didn't want to reveal to her that this was a "bad word", because then I knew she'd pull that out whenever there was tense moment.  (Right now her knowledge of bad words includes "shut up" and "stupid" and "dumb".  She makes sure to point them out when she hears them in a movie or on television.)