See, Everyone DOES Know Me

A few weeks ago, Lotta and found ourselves in St. Vinny's. I was trying on some sunhats. An adult male saw me and commented enthusiastically, "That hat looks really good on you!" I responded, "Thanks!" and he signaled for a high five. Now, normally, I might hesistate, but this man was not giving me any creepy vibes, so I went ahead and high fived. As he walked away, he procalaimed to his mom, "See mom, everyone DOES know me." To which his mom responded, as if she had said this numerous times, "No, no they don't." This interaction delighted me to no end. First, I could relate to the parent, trying to protect her son's kind heart. Secondly, it felt like an opportunity to pay it forward for all the times someone had been kind and played along with Ellie's shenanigans. I always appreciated the strangers who didn't need to know exactly why, but were willing to play along. Finally, I appreciated how much the son truly believed that everyone knew him. It reminded me of how Ellie treated every stranger as a friend she just hadn't had the pleasure to meet yet. The assumption that everyone IS in fact a friend. What a fantastic world to reside in.

Memory Sandwiches part 2

Here's an email I sent to the music and art teachers...

I wanted to let you both know that Madeline tried her best to keep my tears to a minimum by playing all the songs for me beforehand.  I kinda shrugged, and thought, "If she wants a mom that doesn't sob at Fine Arts Night, she's gonna have to find a different version than me!"  

As I was sitting enjoying the music, I suddenly just had moments of flipping back through the years.  I thought about Ellie in a choir concert, something, we NEVER ever imagined would happen.  As she turned around for a movement, her pants were down enough to see her coin slot.   Then, I thought of Lotta's classmate, Walter, really hamming it up at Lapham, enjoying entertaining the audience.  I thought of Lotta wearing a fancy dress and red lipstick to a Fine Arts Night.  I thought of Benja waving wildly at me before his Middle School Orchestra concerts (because he knew how I struggled not to think of Ellie and her 5th grade graduation in the same space.  It always seemed such an incredibly brave thing for a middle schooler to do.)   Such a memory sandwich of that space!!  And I was suddenly filled with awe and wonder that in the blink of an eye the kids before us will be graduating from high school, because it seems just a moment since Ellie and Benja and Lotta were performing there.  And I wanted to make sure to soak up as much of that moment, with all those wonderful words and amazing art, to take with me into the future.  I left pondering how it isn't just this ONE night, it's the whole string of them that lives on.  So, while you may be contemplating the things that didn't go as planned (or maybe you are just sighing with relief it is over!!), please know that the families that attended are adding the night to their memory sandwiches.  Thank you for taking the time and energy to accomplish this feat.  

Much love on this tired tired Friday,

Debi

Signs, Signs, Everywhere

Over Memorial Day weekend we visited St. Charles, MO to say goodbye to my in-laws before they move to Virginia.  It was a somewhat sudden trip, as their health began to decline rapidly and Thom's brothers wanted to move them sooner rather than later (we'd thought we had several months, but it turned into several weeks.)  I wasn't looking forward to the trip, as it is the end of the school year and there is already SO very much happening.  So.  Very.  Much.  When we arrived in St. Charles, we decided to venture to the local bookstore we'd visited during out last visit.  We were enjoying browsing, when I looked down and saw there was a book on a display table written by, "Ellie Kennedy" (it was actually Elle Kennedy, but my brain read it as "Ellie").  Then, when I checked out, the receipt was $113 total (1/13 was the day Ellie died).  Finally, as we were swimming, the song, "I Hope You've had the Time of Your Life" that was played at Ellie's 5th Grade Graduation Ceremony came on.  I shared all this with Benja.  I told him, all of this can be explained logically, of course.  The numbers add up to $113, the song is fairly popular.  However, I DO like the explanation that has a little bit of magic mixed in.  

Then, as we were walking down the stairs at the hotel, the sign said, (oh how I regret not taking a photo to get the exact wording), something about needing to go the level "G" in order to get to the "Exit Discharge".  Every single floor had the same sign.  First of all, exit and discharge seem redundant.  Second of all, if you are thinking of putting the word, "Discharge" on a sign, my advice is to rethink your options, as it may not sound the way you think it does.

Finally, as we traveled the LOOONG road home on Monday, exhausted, ready to be home, to basically jump immediately into the week, we stopped at a roadside stop.  Benja and I were reading signs in one of their displays.  The topic was "How to AVOID Road Rage", with 5 easy steps.  We decided they also needed the alternative, "How to Initiate Road Rage" (Unfortunately, again I am regretting my lack of photographic evidence here).  Step 1:  Maintain Eye Contact with the other drivers.  The longer the better! (In response to "avoid eye contact with the other drivers). Step 5:  You can teach other drivers (in response to "You don't have to teach others how to drive).  We thought a white board with notes for improvement might be the most helpful for this particular step.  

Maybe, St. Charles, needs to change their city slogan to, "city of signs".  

13 Days, 12 Years Later

 

This year, I wasn't sure I had it in me to to do the 13 Days, sometimes I just want to kind of hide, become a bit invisible.  Lotta & Zibbi were NOT having it.  Lotta had even written about the 13 Days in a class presentation of family traditions.  I shared the document with Zibbi's teacher and the teacher I have been working with in 3K.  They BOTH wanted to share the celebration with their classes.  And I was shocked.  I guess within our extended families, it sort of feels like everyone is complete with the 13 Days.  I find, just like Ellie's death, that some of the most unexpected people turn up to help.  Maybe the people I anticipated being able to help are unable to do so for whatever reason.  Then, someone, unexpectedly arrives and seems actually excited about learning more about Ellie's life and how we continue to celebrate her each year.  And, if nothing else, for a break from freaking January (January in the upper midwest is BRUTAL and LONG.)  So, today, on the 23rd anniversary of Ellie's birth, (maybe we should call it her "birthaversary" combining birthday and anniversary?) the designated day was "fancy clothing/fancy hat" day.  As we arrived at school, one of Zibbi's classmates, ran by me with a hat she had decorated and painted in honor of fancy hat day.  I was SUPER impressed.  (I told their mom, bonus points for the extra work!)

To celebrate Ellie's day, Thom & I went to Lazy Jane's.  A restaurant so infused with memory upon memory.  AND where every other scone is compared against the BEST scones in the world (so far).  As we placed our order, they asked what name, and Thom said, "Ellie".  So glappy he is on board.  Then, I noticed the heart picture by the register, and thought, the hunt continues...

Yesterday in the schedule was the "Happy Heart Hunt", in honor of ONE Of Ellie's favorite shapes being hearts (the other was triangles because of the Sesame Street character, Telly loving triangles).  I hadn't spotted many hearts, honestly.  I even wore heart leggings to up my number.  I was super touched that the music teacher made a point of showing me her heart earrings.  And Zibbi's teacher had heart coloring pages to hand out.  Lotta and I went to the grocery store, and as we were checking out, I saw that the cashier had on a heart necklace.  Then, the cashier told me she also had heart earrings going up her ear.  She explained that when her father had passed, her sister had made something into heart necklaces in his honor.  And when I told her about Ellie and hearts, she shared that she had had Leukemia and had survived it through a stem cell transplant from her brother.  And I just thought, WOW, what a wonderful world.  To be able to share ALL that in the line at Willy Street Co-op.  I definitely live in the right place.

On hug day, Zibbi came downstairs and said, "It's hug day", while she opened her arms out wide for a hug.  I was impressed that she was taking the lead.  

On another day, as I was getting into my car to go to work, a very insistent dog kept wanting to interact with me.  As the person she was with pulled her away from me, she said, "Come on, Nellie" and I thought, of COURSE her name is Nellie (Ellie with an N).  

I think the thing is when the 13 Days rolls around, I am more on the lookout for the magic.  And for the people who suddenly show up and the people who just keep showing up.  It is ALWAYS a surprise.  It has been and continues to be an absolutely incredible journey.  Because of Ellie, my relationships with others are richer, deeper more meaningful.  So many times when I get a hug, it is for REAL.  No more half-hearted hugs.  The new people that show up, I feel both wistfulness that they don't get to meet her, and happiness that her story continues.  

Purely Elizabeth

 

This morning I was lamenting not taking the opportunity to do something BIG to commemorate the 10 year anniversary of Ellie's death for breakfast.  As I was reaching for granola (chocolate of course, because that's the way I roll in a pandemic), I noticed the name on the package was, "Purely Elizabeth" (Ellie's full name was Elisabeth).  And I thought, "Ok, maybe, actually this WAS the perfect breakfast."  

The Day Before

I think sometimes the day before is worse than the day of.  The anticipation.  Trying to protect myself by being pre-sad so that maybe just maybe I will not feel so bad the day of.  It never really works.  Yet still my mind tries to set up protective fencing to ward off the hurt.  Tomorrow it will be 10 years since Ellie passed.  And as Thom said, soon she will be gone longer than she was with us.  Hard to wrap my brain around this passing of time.  At the same time, with EVERYTHING going on around us in the world, the whole thing feels somewhat diminished, the storming of the Capitol, racial injustice, not to even mention a pandemic.  I guess ONE benefit to living during this historic time is everything else just seems less in comparison.

It's IN the Name for Crying out Loud!

 Lotta has been bored bored bored bored with breakfast.  We have tried a variety of options to remedy the situation, nothing seems to stick.  Finally, she requested the world's best scones, available from Lazy Jane's.  For some odd reason, they are currently closed Tuesday and Wednesday.  Previously they were closed Mondays.  It almost feels as if they are closed just whatever random day they want (they aren't called "Lazy" for nothing).  Benja and I made a plan to walk to Lazy Jane's on Christmas Eve.  The night before, Thom and I looked up the hours.  Unfortunately, they had not posted in Facebook since last summer (again, I will refer you to their name).  So, Benja and I set off in the freezing cold.  Let me clarify that I am saying freezing, as in Wisconsin freezing, as in your hands are STILL cold with gloves on.  As we walked past Batch, the french bakery on the way to Lazy Jane's, there was a line out the door and around the block.  I began to have a sinking feeling in my stomach.  "What if Lazy Jane's was closed? " I wondered. We arrived and a notice on the door said that they were closed the two weeks of winter break.  Ugh.  So what the heck did we expect really?  On the walk home, I worried how very disappointed everyone would be when we arrived home empty handed.  I decided I would be more upset than anyone else, just to see how that would play out.  I imagined throwing myself on the floor, rolling around and sobbing for those missed, delicious pastries.  And STRANGELY, against all odds, it worked!  I mean there was disappointment.  But no one even came near to my level of disappointment.  Lesson learned.  Not sure what lesson, but still.    

Then today I had a big hankering for a Korova cookie (it's a delicious little dark chocolate cookie with just a sprinkling of salt on top from Batch Bakery).  I decided I would take a walk up there and get myself one of those delectable treats.  I bundled up, grabbed my mask and began walking.  When alas, I arrived, a large sign was on the door proclaiming that this time THEY were on winter break until January 15th.  Sigh.  

Addendum:  

As I was typing this blog, our nation's Capitol was stormed, in an attempt to prevent the certification of our electoral college.  It was extremely distressing to see representatives cowering in fear as men with guns forced their way into the Capitol.  I wondered how in the world I could share a blog about pastries for crying out loud when all of THAT was happening.  After texting with my friend, Tracy, I realized, that TODAY more than ever is a day when we need the comfort that, sometimes, only a pastry can bring.  As my amazing sister has often inquired in times of stress, "Can you get yourself to a pound cake?"  And also, isn't it a sign of our time that we must somehow face our daily tasks/struggles even amidst a coup attempt AND pandemic AND racial injustice AND economic downturn??  Fortunately for ME, my mother shared some absolutely delicious cookies sent by my brother Kip, who appreciates the importance of a good cookie (as illustrated by an incredibly heated cookie contest held for Ellie's After Party).  And boy howdy did I ever enjoy a cookie after dinner.  Until I didn't because I had enjoyed it TOO much and at that point decided I would never again need to eat.  But as they say, it is another day and I can not stop reliving the deliciousness of that cookie.  I may soon, re enact my cookie monster impression.  

Alexa

Oftentimes when we are listening to music on Alexa, Lotta will pipe in with a thumbs up to songs she enjoys (she is particularly into Taylor Swift).  We often remind Lotta that she does not need to "like" previously liked songs.    However, inevitably, Alexa will state, "Thank you, your likes help me pick songs for you,"  Or some such encouraging words.  On the other hand, when I re-like a song I have previously liked, Alexa will say, "Feedback already recorderd."  I feel like this is age discrimination.  If it is a younger person, Alexa is interested in their opinion.  However, if it is someone in their 50s, such as myself, the response instead is, "Hey, old lady, we don't care what you think."  I know, you may wonder if I am being paranoid.  However, is it paranoid if it is true?  (I should inquire with Alexa). 

Also, lately, I have tried to whisper to Alexa.  If you whisper to her a command, she will whisper back her response.  Let's say I am trying to be sneaky and whisper, "Alexa, turn on Christmas", which will magically turn on the Christmas Tree lights (I know, I am living the LIFE!")  Everyone in the house seems to agree that I am a LOUD whisperer, who should under no circumstances be entrusted with secrets.  Which then further causes everyone around me to demonstrate how to whisper "properly".  It reminds me of Ellie, who never really got the hang of whispering.  It was always more of a low talk.  (Or closing her eyes for that matter, we had to place her hand over her eyes for EEGs).  Who knows, now that I think of it, maybe I taught her that.  

A Return to Grace

Yesterday afternoon we noticed a mysterious box upon the front porch, sent from our previous neighbor and fantastic friend, LinZ.  LinZ is one of the main reasons I regularly started blogging again, because she had written how she was re-reading blogs.  Additionally, she writes me meandering letters which are a joy to read, as if we'd just sat down with a cup of tea and shared a story.  When she and her lovely family moved to Portland, I ended up missing them more than I had anticipated.  They are just the kind of family that the neighborhood and community just feels better, safer, more wonderful when they are a part of it.  Anyway, LinZ had unearthed Baby Gracie from her basement, because her children are past the doll playing stage, she thought.  However, as she was packaging up Gracie to mail, her daughter, Juna said, "Wait!  I am not done with Gracie!"  When baby Gracie arrived, with a tear in my eye and love in my heart, I reread the story of Gracie to Lotta and Zibbi, her new "moms".   This post was written one of the first months of my blog back in November, 2008.  What a loong journey we went on together Gracie.  We are ecstatic she made it back to Madison AND that she's spent such a fun time in Portland all these years.  Below is the original blog...

Sunday, November 30, 2008

Baby Gracie

I crept down to the scary, dank, basement to retrieve something from storage.  There lay Gracie, abandoned and forgotten.  At one point, Gracie had been the most important "friend" Ellie had, but her time had long since passed.  I bought Gracie when Ellie was going through chemotherapy so she would have a special friend to take with her each week during hospital time.  When Ellie would become upset, we would say, "Gracie feels so sad and scared, what should we tell her?"  And Ellie would  stop crying to comfort her baby, telling Gracie that everything would be OK.  

The first time we brought Gracie in and it worked so well, our nurse, Becky exclaimed how much she loved Gracie because Gracie made her job so much easier.  Becky was one of those phenomenal people that make the rest of us feel like slackers.  Not only has she adopted something like 4 children from the foster care system, but she works as a nurse, and she runs a business.  Becky was an astounding nurse and someone that made going through chemo with a 4-year-old that much easier because we knew she was on our side.  At one point, she was at a Candlelighters luncheon and I went over to tell her how much her exceptional care had meant to all of us.  She teared up when I told her and she said that she always felt so horrible giving Ellie her chemo because it felt so much as if she were hurting Ellie (or Zeba Beba Donna Sandy as she called herself at the time, but that is a different blog all together). 

Once when Ellie was in the PICU, she was covered in tubes.  She had gone into respiratory arrest and when she started to come out of the sedation, she was panicked when she felt all the tubes emanating from her body.  She become really agitated and tried to get out of bed.  I had Gracie on the bed with Ellie and put Gracie into Ellie's arms.  She closed her eyes and began to rub Gracie's head as she calmed down immediately.  That was the magic of Gracie. 

Before Gracie, Ellie had been given a doll named Tabitha.  Ellie's relationship with Tabitha was not quite as tender as her relationship with Gracie.  Ellie's favorite game with Tabitha was to throw her down the stairs.  Tabitha had some kind of battery inside of her that allowed her to "talk".  When her battery started to run out, the talking would not stop and she was like something out of a horror movie.  Garbled, deep sounds emanated from her body that would not subside.  Quite frightening I've gotta tell you.  Finally, Tabitha, after one too many tosses down the stairs lost the use of one of her open-close eyes.  One eye remained permanently shut.  We used this to our advantage by taking her with us to the eye doctor once to find out if anything could be done, or at the very least get a fancy name for the one eye won't open syndrome.  There is a name for it, by the way, but I cannot recall what it is, for it was in fact, quite long and quite fancy. 

Ellie was done with Gracie a while ago, maybe a year or so.  I however was not.  I could not just give Gracie to the thrift store as I do most toys that we are finished with.  She had just meant too much to us at too many pivotal times.  So instead, I held onto her which is why I found her abandoned in the basement.  Suddenly it hit me that the couple across the street have a beautiful 6 month old who would most likely give Gracie loads of lovin'.  My hope for baby Juna is that when she has her moments of fear or upset that Baby Gracie will give her the same special magic that she gave to Ellie when she needed it most.

Reading

 Growing up, I read a LOT.  Partially because I had fairly severe asthma, so it was a way to occupy my time, even during an attack.  My younger brother, Kip remembers me staring down longingly from my room as everyone else frolicked in the yard.  However, what I recall is having UNINTERRUPTED reading time, snuggled down in bed with a great book.  Sometimes when I'd go over to my dad's for visits, I would stay in bed quietly reading, hoping no one would notice I was awake so I could start my day absorbed in a good book.  A few months ago, I realized how this history with reading has helped us all immensely during this pandemic.  (Not to even mention how much much Ellie adored books!) Since we can't safely do what we normally do, everyone in the house has become consumed with reading.  I have been reading aloud The Penderwicks (feels like a modern day Little Women) to Lotta and Zibbi whenever we have a free moment.  I approach it as a one woman show.  We've also read through almost all The Chronicles of Narnia.  And we've begun the Harry Potter series. 

This week, Lotta and Zibbi started creating their own chapter books.  I think in hindsight, we will look back on this as "The Year of Reading." What a terrific continuation of the story Kip started.  

Insurance Policy

Whenever I got to Marquette Elementary, I always look for the garden stone Ellie's classmates made for her.  And the bench that was replaced by Julie and Nick the year that Ellie would have graduated.  As I approached Marquette on Friday for materials pick up (something you do when your children are virtual learning), I noticed the stone had been moved.  I then clocked that the entire Marquette sign was missing.  A man approached the sign, and I inquired what was happening.  He sighed heavily and explained that he was trying his best to fix it, but he wasn't super hopeful.  I then OVER shared with him how the Garden Stone and bench were in honor of Ellie.  Then, of course, I went on to tell him how Ellie died 10 years ago, when she was in 5th grade and how her classmates created these in her memory.  I walked away feeling like, "Ugh!  Why in the world did I share so much with him??"  Because during this worldwide pandemic, so many of the times when I encounter people outside my family, I either have absolutely nothing to say or conversely, I have EVERYTHING to say.  It is so embarrassing.  As I walked away, I saw this man, bending down to pull weeds around Ellie's garden stone.  And I realized that I had just created an insurance policy that he would take extra special care that nothing happened to that stone.  I guess in the end, it changed both of our days.  

Unexpected

 Maybe a month ago (time has lost all meaning during this pandemic), my neighbor, Kathy, told me that a friend of the family, whom they'd known since she was a baby, had been driving downtown with the windows down and some people had tried to set her on fire.  She asked if I would send this young woman a card, as she really liked receiving mail.  Of course I complied.  

When I sat down to write the card, I realized I had no words.  What words could there be to someone so young who had experienced such an atrocity?  So, I told her about Ellie.  I wrote how Ellie and I sometimes would be sitting in her hospital room and we could hear other children crying in pain or fear or confusion.  Feeling helpless, but wanting to "do" something, we would throw the crying child a hug.  I told this woman, that I was throwing her a hug.  That I wanted her to know that she was not alone.  

After sending her cards, I realized this young woman had been an assistant in some of the classes for Lotta and Zibbi's circus arts classes.  Madison is like that, though, small and large, where you suddenly realize you have been talking about the same person, without realizing it.

Then, maybe a month later, I received a postcard back.  It was a postcard that she'd created to send to all the people who had written to her.  It started, "And Still I Rise..." And it went on to talk about her future hopes and dreams, of finishing college and someday owning a rescue farm for "any animal or person who might need a safe haven."  On the back, she'd written, "I remember your daughter well.  We started playing together at recess after I asked her what her face cloth was for (Ellie like to use cloth handkerchiefs, I assume that's what she was asking about).  I then made sure to sit with her at lunch.  She was an awesome friend.  She asked a lot of questions.  I also remember liking her shoes.  I made my mom get me a pair so I could match.  I missed her very much when she passed.  She was a much needed friend while I was looking to fit in as a brown kid.  Sending you much love."

I had no idea that she'd been classmates with Ellie.  After Ellie died, one of Ellie's classmates was so upset he had to leave school.  At the time, I had this really strange feeling like when your child hurts another child and you work to fix the problem.  (I was lucky enough to run into this classmate at a park a year or so later and we were able to chat.  He was super upset that Ellie had died 13 days before her birthday.  I explained to him that Ellie had never cared much about birthdays.) But this young woman telling me Ellie made a difference to her at school, helping her feel more at ease, spreading her joy like she so liked to do, left me with the opposite feeling.  That rare and fleeting moment as a parent when you feel like somehow, you did something right.  

The mysterious mail carrier...

Lotta told me recently that she used to think the mail carrier was like Santa Claus.  He was not supposed to be seen by anyone, so would sneak around the neighborhood delivering mail only when no one was watching.  I told her at one point we had a super friendly mail carrier.  I would often chat with him while waiting at the bus stop.  One day after Ellie died, I was curious if he knew, by the mail we were receiving at the time, if he knew about Ellie's death.  I ended up telling him how she'd died recently, and how it was 13 days away from her birthday.  He stopped, shocked.  He told me that his daughter had the exact same birth day.  I could tell it really shook him up, made him feel vulnerable for his own family.  Soon after, his route was switched.  And I wondered if he'd requested a switch because he couldn't handle that kind of vulnerability.  I know the world doesn't actually revolve around me...Luckily, maybe a year later, I ran into him when I was walking around town.  We were both equally excited to see one another once more.  I was startled when he even leaned in for a hug.  He explained that he'd been reassigned another route, that he missed his old one.  And I of course, told him, we missed him too.  I just think it's so magical when you actually get closure on something and you don't have to just keep wondering what happened or making up your own endings.

Sensible and Safe

Always wear a helmet when riding an oversize bike.

For some reason, Zibbi decided it would be a good idea to crawl into the bathtub head first, I know in her mind it somehow made all the sense in the world.  Her hands were supporting her, but she very nearly splatted across the tub.  When she emerged from this debacle, she explained how important it is to protect your head because your brain controls everything!  Maybe even your heart.  (They are discussing safety at school right now).  I responded with how that was why having a tumor in her brain was so problematic for Ellie.  I went on to say that we do have a skull to protect our brains from occasional head injury.  Not to encourage head banging, I cautioned that the problem happens when your brain is repeatedly hit, such as for football players.  Even the helmet cannot protect their brains from repeated assault.  Then, Zibbi stopped and wondered if Ellie had played football.  I said that she had not.  Then Zibbi wondered how Ellie had a tumor in her brain.  I told her that no one really knows why some people grow tumors.  But I thought that maybe before Ellie came into her body, she decided she wanted to come here and spread love and do that through having a brain tumor.  Even though she wouldn't be here long, she'd spread lots of joy in the short time she was here.  This explanation made NO sense at all to Zibbi (but again, she hadn't really proven her sensibility either...)

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

Just a quote...

I recently read My Sister's Keeper by Jodi Picoult.  I fell in love with this quote, "I realize then that we never have children, we receive them.  And sometimes it's not for quite as long as we would have expected or hoped.  But it is still far better than never having had these children at all."

The Attitalk Revisited

So this start of school has been particularly challenging as Ben has entered the last grade Ellie ever attended, 5th. And it occurred to me that quite soon her younger brother will be older than she ever was.  Once I am able to wrap my brain around the idea I will be fine. It's just the concept is so shocking. Wish I'd never thought it!

 Plus there are all those crayons on sale to not buy. Plus Lotta just started kindergarten and tells me every day how much she is missing me. Emotional time of the year. 

One week into the school year and things have simmered down a bit. It was a gorgeous fall day and Zibbi and I were hanging out at the capital after the farmer's market. 

Zibbi suddenly started, without any prompting from me, doing the attitalk.  The Attitalk was one of Ellie's favorite things. It is an attitude walk where you place your hands on your hips and walk like a model. With grace and style and attitude. Now Zibbi is carrying on the tradition and

working it like her older sister did. 

another of Ben's wishes comes true

On Wednesday, I dropped my mom and Moffat off at the airport and returned home with Ben.  My mom called after checking in to tell me how much she had enjoyed our magnificent visit.  As she was talking, I kept hearing a beeping.  I looked at my phone to see if someone else were trying to call but did not see any message, so I assumed it was my mom's phone.  After I hung up, the phone informed me that I had missed a call from Ellie's teacher, Ms. Pettit.  When I listened to the voicemail, I discovered that Ellie was having a seizure that was  lasting around 5 minutes.  When a seizure lasts longer than 3 minutes, we have been instructed to administer Ellie's anti-seizure medication.  The paramedics were called in for assistance when it appeared Ellie was not coming out of it.  I was panicked as I tried to get my phone to work and kept hitting the wrong buttons, tried to get Ben's lunch packed up and myself in the car while continuing to breathe breathe breathe. 

When I arrived at the school, Ellie's teacher was awaiting us outside.  I raced in and she assisted Ben in exiting the car.    Ellie was coming around by the time I arrived, although she was still laying on her side, she was chatting up the medical team surrounding her.  An ambulance had been called to transport Ellie to the ER.  Ellie was nervous about riding in the ambulance by herself so I asked if Ben could also ride in the ambulance with me.  As the paramedics wheeled Ellie to the elevator, Ben bounded down the steps, telling everyone in sight that he was going to get to ride in an ambulance.  I mean he could not believe his good luck.  What a contrast between all of the somber adults, worried about Ellie's well-being and Ben full of enthusiasm and exuberance for his upcoming adventure.  Ellie was a bit afraid riding in bed where she was strapped down until I told her it was similar to riding in a bed at the hospital (which she has done plenty of as of late!)  The whole time we were riding, Ben had a running list of questions.  Why does the route look different from an ambulance?  (Answer:  Because we were facing back instead of front.)  Why did we keep stopping? (Answer: stop lights.) What other colors do ambulances come in?  (Answer:  red, white, green.  Ben would like a green one "next time".)  The baby was moving around like crazy the whole ambulance ride. 

By the time we arrived in the ER, Ellie had pretty much recovered and, although she was super sleepy on the ambulance ride, she was pretty much back to her chatty self in the ER.  And can I just say that you really do get the best service when you arrive by ambulance.  A child life worker, Amanda, was in the room and immediately set to work accompanying Ben to Tyler's Place.  Ellie had had a highly stinky and messy accident during her seizure so I set to work cleaning her up.  When Amanda returned she assisted me in that task as well as retrieving crayons for Ellie to work on.  Thom arrived a bit later with clean clothes for Ellie (and more crayons just in case).  He explained that he had gone ahead and ran his errands beforehand (what I titled, "Pulling an Elaine". From the Seinfeld episode where Elaine takes the time to stop and get candy at the movie theatre before arriving at the hospital bed of a friend.)   No one really knows why Ellie had a seizure today.  It seemed that she had a small one (lasting about a minute), last Wednesday.  Perhaps Wednesdays just make her have seizures.  It remains yet another medical mystery. 

Amazing how a day can change in a flash and then change right back...I think one thing I am greatful for today is that Ellie was doing better even when I arrived at the school.  Whenever there is some type of "emergency" situation that Ellie quickly recovers from, I somehow feel as if we have bypassed something.  Like we might have had to stay once again in the hospital, but we somehow got out of it.  Like getting to leave work early.  Or cake not on your birthday.  Or a surprise visit from somebody you love.  A warm day in March (in Wisconsin that does not happen very often). I almost feel giddy in the end, knowing that she is home now and feeling better.  Having Ben with us and his super excited attitude also puts things in a different perspective than we would have had otherwise.  Knowing that HE was beyond excited, made the experience more fun than scary.  And seriously we have been to the ER so many times as of late it hardly seems   'emergency'  anymore.  On the ambulance ride, the paramedic told Ellie that she would probably rather be doing something else than going back to the hospital.  To which I responded that we like to focus on the things we like about the hospital, such as all the friends we have there.  Then when we arrived, our oncology nurse, the fabulous Peter, was called to see if he could come and do the poke, making it easier for Ellie.  Because as Ben so clearly illustrates, going to the hospital does not have to be a tragedy or even something that ruins our day (although I think riding in the ambulance most certainly MADE his day).

Birthin them babies

OK, so I know that a lot of you have already heard this story numerous times.  So skip it if you want.  I won't know.  Go ahead.  Go read your other e-mails and blogs...If you are going to stay, I recommend getting a cup of coffee or tea because this is going to take awhile, this is my longest blog to date.  I'll meet you back here.   I must warn you that there are some extremely adorable baby pictures, so "watch out" as Ellie likes to say...

Angels woke me up the night Ellie was born to let me know that she was about to arrive (see Angels Angels Everywhere for a cool tie in).  I was asleep in one of our living room chairs when I was awakened by the absolute knowing that birth was about to begin.  As I arose from the chair, I thought how crazy that was, because there were no obvious signs that that was the case.  I went into the bedroom and lay down when suddenly my water broke.   From all the literature I had read, we had loads of time before having to arrive at the hospital, so I took my time taking a shower, blow drying my hair, preparing myself.  I was still feeling good, just occasionally a slight contraction that would slow me down.  Thom began timing my contractions and he realized that we needed to be at the hospital five minutes ago.  Weird.  I was still feeling like taking my time. 

When we arrived at the hospital, the contractions became more serious.  Things suddenly did not seem as funny to me anymore.  At this point the contractions stopped me in my tracks. 

It must have been a busy night at the hospital, because we hardly saw a nurse or doctor or resident the entire time.  Which was actually fine because when no one was checking in on us, I felt as if my body was doing what it was meant to do.  The checking in actually felt as if it slowed me down, interrupted me.  I imagined each contraction as a wave that I would ride, it would come in and peak, then it would retreat.  It felt sacred with just Thom and I together birthing this baby. 

When I felt the urge to push, I was still in the whirlpool bathtub that was a part of our birthing suite.  I told Thom the baby was coming.  He misunderstood and encouraged me, saying that was something good to focus on, that an actual baby would come out of all of this.  Then when a resident came in to check on me, she panicked, because she could feel the baby's head crowning.  This baby was coming out NOW. 

Suddenly, our birth room was filled with nurses, residents, doctors, interns, possibly a fix-it person and an auto mechanic.  I am not sure, there were just a whole heck of a lot of people there.  Anyway, they got me out of the bathtub and onto the bed and told me NOT to push because the doctor had not arrived.  I adored our OB/GYN, Dr. Thorpe.  I did a lot of research on my own and every appointment I had we would discuss what I had read.  The other doctors in her practice I did not enjoy as much, they were older male doctors who did not seem to hear what I had to say as legitimate.  Definately NOT who I wanted to deliver my baby.  So when Dr. Thorpe came in to check on us at one point during labor, I told her that I wanted her to deliver our baby and she actually left surgery to come deliver our baby girl!  Well, when our room was filled up with people, telling me NOT to push, that just made no sense whatsoever.  It was like telling

everyone in that crowded room not to breathe.  Or not to crowd the room.  It just didn't make sense.  And one of the many people in the room requested that I not be so loud.  (To which Thom responded by whispering that I could be as loud as I wanted.)  The whole thing

[caption id="attachment_793" align="alignleft" width="300" caption="Hat girl chillin' out."][/caption]

took 9 hours from start to finish, extremely short, particularly for a first pregnancy. 

I think the thing that was the most challenging for us during our hospital stay was how one nurse would come and and tell us one thing and the next nurse would come in and tell us the exact opposite.  I think the dealbreaker for us was when we finally finally fell asleep our first night, the night nurse came in, turned on all the lights and asked me if I had urinated.  That part of it was so not relaxing to us that we left early. 

Later the hospital sent over a midwife to check in on us and when I complained that I was having trouble sleeping with Ellie so far from me, she suggested we co-sleep.  Probably the best piece of parenting advice I have ever gotten, after that we all slept better.  How wonderful it was to have her little body snuggled against mine each night.  There was even one night as a newborn that she actually pushed herself closer to me and began to nurse. 

When I got pregnant with Ben, we knew that we wanted to create a different birth experience.  The hospital birth had been fine and we were glad we had Ellie in the hospital with the doctor of our choice but we just wanted to try something new.  We wanted the second birth to be more about OUR family and about the sacredness that we had felt when we were alone in the hospital the first time. 

So I started researching Doulas and Midwives in Madison.  No one really excited me too much.  Well I really liked one midwife but a lot of other people did too, so she was completely booked when I estimated I would deliver.  Then Thom & I began discussing the possibility of having our baby at home unassisted--a do-it-yourself birth.  I do not believe that pregnancy is an illness.  Women were having babies long before hospitals were around. 

I read about how 1 family a day in Colorado was choosing to have a baby at home unassisted.  The more Thom & I discussed this option, the more we became excited about it.  We understood that a lot of people would be freaked out by our choice, so we tried to keep it on the down low.  However, this proved to be quite challenging particularly when the first thing someone asks is, "Where are you delivering?"  One homeschooling mom advised me not to tell anyone that I was planning on having the baby at home unassisted. How unfortunate that with all of the wonderful options available to us here in America, that we can not discuss our choices without fear.  My friend, Amy Riley is writing a book about women's birth experiences (www.expectthebestbook.wordpress.com) to provide a safe place to converse, and my birth story will be in the book when it comes out next fall. 

But back to the story...Ellie began chemotherapy during my second trimester and we were at the hospital a great deal, which only solidified our decision to have the baby at home.  I could not imagine leaving Ellie at home with someone else during that time.  She needed US and we needed to be near her too.  I continued to do research on the topic of birthing at home and decided that I would type all of the information I had compiled into an easy-to-read chart for Thom.  Maybe I'd even get it laminated. 

 It was Easter Sunday and I was way pregnant.  We were sitting at the table after brunch.  My sister was coming to visit the next week and she had said explicitly that she did not want to have anything to do with placentas.  I said that I thought it would be best to have the baby before Susan arrived and respect her request.  Suddenly I started feeling a bit gassy.  Thom noticed that the "gas pains" were coming at regular intervals, sort of like contractions.  

Well, I did not have my hand dandy chart ready yet, so this could not be IT.  Well, chart or not, it was.  And away we went.  Thom was unwavering in his conviction that we could in fact do this at home, even when I had my moments of doubt.  He was so excited when labor began and I started to sing my "birthing song".  Ellie liked the birthing song at first and we explained that the baby was about to be born.  She kept needing Thom to help her with things, getting food for example, and when he would ask to go assist her it would seem like  good idea, until a contraction hit and then I thought it was the worst idea ever and I could not believe he had "left" me. 

Then I got the point where I hit, as they say in running, "the wall".  I just felt like I could not go on.  I had read about some women who realized that they were stalling themselves in labor.  I realized I was telling myself that there was no way I could do this, that I could not under any circumstances have a newborn when my oldest child was undergoing chemotherapy.  The deal was off. 

Once I began to tell myself that I could do this, things progressed very quickly.  Ellie came in as Ben was coming out and she decided that she would rather be in the bookshop reading books than watching her brother emerge.  We were convinced that Ben was going to be a girl, so after he was born, I was holding him, saying, " Ellenora", when I decided I should probably check.  And boy oh boy was he a boy!  (Genitals in newborns are enlarged, therefore gender is quite apparent). 

Then we had the dilemma of what to name this boy.  Ellie came in and suggested Daniel, because the book she had been reading had a Daniel in it.  We thought that might be confusing with her Uncle Daniel.  I was sitting thinking how much I like the name, Benjamin, when Ellie came in and said, "How about Benjamin?"  She often reads my mind like that. 

The next day, Thom took Ellie for her chemotherapy and went to the office to get a birth certificate for Ben (I'd called before hand to get a heads up on what was required.)  When Thom arrived at the office they told him that they could not issue a birth certificate without corroboration from a midwife or doctor.  Oh boy, that was a conundrum.  We called the midwife whom I'd liked so much and she came to our home, checked out Ben, weighed him and told us how much she admired our choice.  I recovered much more quickly from Ben's birth partly because I wasn't thinking that I would need to recover. 

The week after his birth, my sister arrived, and I was somehow able to keep the whole birth from her.  Thom picked her up from the airport and Susan ran into a friend at the Madison Airport she hadn't seen in years.  She was shocked at how insistent Thom, the typically laid back guy, was in getting her home.  I mean she just needed a minute to talk with her friend for crying out loud!  Thom knew that I was at home anxiously awaiting their arrival.  So when Susan arrived with her 2 girls, I was sitting in the chair holding Ben.  Susan stopped to talk with Ellie first and then walked in to our living room and did a double take.  She did not even see Ben at first so expecting to see me pregnant was she.  It was fun to surprise someone like Susan who is always (or almost, now that I've surprised her 3 times!) in the know.   

The thing I am proudest of in this story is how even though we had a lot of pressure to conform to having our baby the way other people felt was the safest,  we absolutely knew in our hearts that this was the best choice for our family.  We proceeded in creating the birth we wanted to create even in the midst of a lot of fear to the contrary.  I knew that times in the past that I was most frustrated with myself was when I did not listen to my intuition, my inner guidance, but instead succumbed to someone else's vision for my life.  It was truly an amazing experience, thank you for allowing me to share it with you.

Baby Gracie

I crept down to the scary, dank, basement to retrieve something from storage.  There lay Gracie, abandoned and forgotten.  At one point, Gracie had been the most important "friend" Ellie had, but her time had long since passed.  I bought Gracie when Ellie was going through chemotherapy so she would have a special friend to take with her each week during hospital time.  When Ellie would become upset, we would say, "Gracie feels so sad and scared, what should we tell her?"  And Ellie would  stop crying to comfort her baby, telling Gracie that everything would be OK.  

The first time we brought Gracie in and it worked so well, our nurse, Becky exclaimed how much she loved Gracie because Gracie made her job so much easier.  Becky was one of those phenomenal people that make the rest of us feel like slackers.  Not only has she adopted something like 4 children from the foster care system, but she works as a nurse, and she runs a business.  Becky was an astounding nurse and someone that made going through chemo with a 4-year-old that much easier because we knew she was on our side.  At one point, she was at a Candlelighters luncheon and I went over to tell her how much her exceptional care had meant to all of us.  She teared up when I told her and she said that she always felt so horrible giving Ellie her chemo because it felt so much as if she were hurting Ellie (or Zeba Beba Donna Sandy as she called herself at the time, but that is a different blog all together). 

Once when Ellie was in the PICU, she was covered in tubes.  She had gone into respiratory arrest and when she started to come out of the sedation, she was panicked when she felt all the tubes emanating from her body.  She become really agitated and tried to get out of bed.  I had Gracie on the bed with Ellie and put Gracie into Ellie's arms.  She closed her eyes and began to rub Gracie's head as she calmed down immediately.  That was the magic of Gracie. 

Before Gracie, Ellie had been given a doll named Tabitha.  Ellie's relationship with Tabitha was not quite as tender as her relationship with Gracie.  Ellie's favorite game with Tabitha was to throw her down the stairs.  Tabitha had some kind of battery inside of her that allowed her to "talk".  When her battery started to run out, the talking would not stop and she was like something out of a horror movie.  Garbled, deep sounds emanated from her body that would not subside.  Quite frightening I've gotta tell you.  Finally, Tabitha, after one too many tosses down the stairs lost the use of one of her open-close eyes.  One eye remained permanently shut.  We used this to our advantage by taking her with us to the eye doctor once to find out if anything could be done, or at the very least get a fancy name for the one eye won't open
syndrome.  There is a name for it, by the way, but I cannot recall what it is, for it was in fact, quite long and quite fancy. 

Ellie was done with Gracie a while ago, maybe a year or so.  I however was not.  I could not just give Gracie to the thrift store as I do most toys that we are finished with.  She had just meant too much to us at too many pivotal times.  So instead, I held onto her which is why I found her abandoned in the basement.  Suddenly it hit me that the couple across the street have a beautiful 6 month old who would most likely give Gracie loads of lovin'.  My hope for baby Juna is that when she has her moments of fear or upset that Baby Gracie will give her the same special magic that she gave to Ellie when she needed it most.