More bits of Ben

[caption id="attachment_592" align="alignleft" width="300" caption="Even fingers can be a good time."][/caption]

The snow began to fall at a steady pace and as Ben looked outside, he became so excited his body could not contain it and he began jumping up and down.  When we emerged from the store, he spun in a circle, really feeling the falling snow on his skin.  He stuck out his tongue to try to catch the snow so that he could taste it.  He had been waiting for the snow since August, when he started each and every morning by looking out our bedroom window to see if there was any snow.  Yet.  No amount of persuasion would convince him otherwise.  When it finally did snow, some 2 months later, he exclaimed, "I been waiting for this snow!!" 

[caption id="attachment_145" align="alignright" width="300" caption="Ben before difficult."][/caption]

Some things about three can be so hard on a parent.  The energy, the saying "no", the constant vigilance for safety. The sudden realization that he has an opinion that is much different from his sister's.  Or his mom's.  Or anyone else's. 

Recently, Ellie had a cold/flu thing going on and I was indecisive about whether or not to send Ellie to school.  First she seemed up for it, so I explained to Ben that we would be taking Ellie and then going to the library.  Ben protested that he did not want to leave, but wanted to stay home.  Then, Ellie's energy plummeted right before we were ready to leave and we suddenly decided that she should stay home.  To which Ben responded that he really wanted to go to the library.  To which I in turn queried whether he was trying to be "difficult".  To which he laughed. 

[caption id="attachment_598" align="alignleft" width="300" caption="Ben can even find fun under the bathroom sink."][/caption]

Ben doesn't walk, he either bounces or runs.  Or both.  He is a little ball of energy.  He can barely contain his enthusiasm.  When he experiences something, he does so wholeheartedly, without reservation.  Without restraint.  He is a race car taking off.  A rocket shooting through the night sky.  Sometimes when he gets upset, I don't even see him melt into the floor.  One minute he is standing, the next he is flat out sprawled on the floor.  The surface of the floor does not matter or impede his melting.  It is performance art. 

Ben loves to draw and paint and play with playdough and cut thngs with little scissors, leaving a trail throughout the house.  As he creates his artwork, he also creates a story along with

[caption id="attachment_597" align="alignright" width="300" caption="Ben snuggles"][/caption]

his artwork.  Many times there is a rocket or a tornado or more recently, a dinosaur.  (T-Rex is his favorite).

One day recently, I brought home balloons.  Five balloons to be exact.  When I ask Ben how many of something he would like, inevitably, it is five.  Five is the biggest he can come up with.  First Ben used the balloons to decorate the downstairs.  Then he used the balloon holders as a "conductor phone" to talk to all of the passengers on his train.  Then he set up a balloon store, where you guessed it, all the balloons cost $5.  He just has this amazing ability to take something like balloons and turn it into a whole herd of fun.  He has shown me again and again and again how fun is truly not a place or thing but a disposition a feeling inside.   He does not need to go anywhere to be entertained or amused, he is already having a good time.  HE is the good time.

School days

[caption id="attachment_149" align="alignleft" width="300" caption="Tired girl"][/caption]

After Ellie's surgery in April, Crazy came to visit for an extended stay.  Our world was shrinking as Ellie lost interest in the few things she pursued prior to surgery. She would become much more upset about things for longer periods of time than she had previously.  At times it seemed as if she were just wandering aimlessly about the house or obsessively peeling crayons.  But, you know what "they" say (whoever these mysterious "theys" are who make up all the rules), when you are at the bottom, there is only one place to go--up.   That meant something had to change.  And soon.

The physical therapist we worked with this summer had worked for years in the Madison Public School System and she encouraged us to explore this option.  For years, I had imagined Ellie sitting in a crowded classroom, dying a little inside each day (I do have the flair for the dramatic, don't I?)  I imagined the other children taunting her relentlessly for her differences.  I could not imagine Ellie having enough energy to withstand all of the stimulus of a classroom. 

[caption id="attachment_490" align="alignright" width="300" caption="Adament girl, I will NOT go to school"][/caption]

We began to discuss the possibility of going to school with Ellie, to which she responded adamantly that she would never ever go to school.  But the more we discussed all of the wonderful things that could happen there, the less resistant Ellie became.  We also were fortunate to find a fabulous special education teacher, Abigail, who kidsat Ellie this summer.  So when Ellie would become reluctant, I would discuss how fun it would be to hang out at school with a bunch of "Abigails".   

The week before school started, every day we would walk to school and "practice" going into Ellie's classroom and talking with her teacher, Ms. Mack.  By the end of the week, Ellie seemed ready for the real deal. 

It had been decided that Ellie would begin school with a 30 minute day, working her way up to 3 hours.  Because we had such little time the first day, Ben & I went out to the playground while Ellie was in school.  I wanted to be nearby just in case I was needed.  After our half hour, Ben & I went inside to wait for Ellie.  When I walked into the building, I could hear her screaming and I felt a sinking in my stomach.  She was wailing at the top of her lungs.  Oh boy, I thought, this is not going well. 

[caption id="attachment_460" align="alignleft" width="300" caption="Smiley girl"][/caption]

I think what amazed me the most is how the staff then rallied together to come up with a new game plan for the very next day.  They all realized that expecting Ellie to sit in a classroom was too much for her right then.  They set up a social skills group to help her learn to take turns and feel more comfortable interacting with her peers.  Now when she has "lunch bunch" as it is now called, she wants to sit next to the other students, instead of wanting to sit next to the teachers, as she probably did at first.

Here are the main utterly amazing teachers Ellie interacts with at school: 

Ms. Zahrt is the special education student teacher.  When I see Ms Zahrt interacting with Ellie her face is filled with love.  Both Ms. Zahrt and Ms. Zwart (confusing huh?) the special education teachers are so patient and kind when the speak with Ellie.  I love the reports that Ms. Zahrt sends home because she always includes all the things that she is proud of that Ellie is doing along with smiley faces, minimizing the challenges that were faced.  Not only does she "get" Ellie, but she finds her entertaining and amusing.  Ellie has already begun to talk about how much she will miss Ms. Zahrt when she leaves to do student teaching elsewhere next semester.  When Ms. Zahrt saw Ellie for the last time Thursday she was so sad that she cried thinking of how she would miss the students she had connected with this semester.  I was shocked at how much she was dedicated to Ellie.  I hate to see someone cry alone and if I'd had just a few more minutes, I am quite sure that I could have produced a few tears myself. 

Ms. Zwart, the special education teacher,  e-mailed me daily at first to let me know how Ellie was doing and to ask pertinent questions.  She is a teacher through and through.  Often when Ms. Zahrt speaks to Ellie, I can hear Ms. Zwart in her.  She gave me a ride home after a planning meeting and viewed The Bookshop for herself (an often talked about place during Lunch Bunch).  She has gone above and beyond her job description in finding ways to creatively handle situations with Ellie.  She was described to me by another teacher as, "Everything you would want in a special education teacher." 

[caption id="attachment_82" align="alignright" width="300" caption="Hat Girl"][/caption]

When Ellie and I were practicing going to school, one of Ms. Mack's previous students arrived at the door.  I could tell from observing that Ms. Mack thoroughly enjoys spending time and interacting with children.  She is genuinely interested in what they have to say.  When I attended school meetings at the begining of the year, Ms. Mack was in attendance and she made me feel as if a good girlfriend was sitting next to me, laughing at my not always funny jokes.  Watching my back.  She chimed in at one point during a meeting where Ellie was being described to say how charming and delightful Ellie is and how far she had come in a short amount of time. 

Ms. Kapp is the student teacher in the main classroom.  One of the first times we met, we discussed how we had both walked the Make-A-Wish walk in Milwaukee.  She walked in honor of her brother who had passed away when she was in 3rd grade.  It was wonderful having her at meetings, because I always felt as if I had someone there who understood just a little bit more than everybody else.  Then there are several teacher's aides who help along the way--Ms. Roundtree and Wendy.  When we first started going to school, the principal, made sure that Ellie knew her because she wanted Ellie to feel as if she were surrounded by friends who could assist her if she should need assistance.  I am quite certain that Ellie would not be doing as well or loving school as much as she does if it were not for these very talented, patient, kind, women.

Ellie's fellow students have been amazing in helping Ellie to feel more comfortable and welcome.  During the fall when we walked to school daily, her classmate, Izzy would always run up to greet us if she were on the playground.  One day as we were dropping Ellie off, her classmates were going out to recess.  One of the students halted in excitement at seeing Ellie in the vestibule.  All of her classmates starting doing Ellie's special "double wave" (using both hands to wave because one hand just isn't enough).  When her class was discussing "Eurasia", one of her classmates pointed out that that sounded like an "Ellie word".  I was so afraid that Ellie would be teased by her classmates, but instead they have adopted her as their class mascot, showing her love and companionship. 

School has been so much better than we ever could have imagined.  Our lives have been turned upside down, from a time when we could not imagine Ellie having the energy to go to school to now Ellie being shocked if she is not at school on a weekday.  She is now up to three hours a day without a problem and there have been discussions of moving towards a full day.  AMAZING!!

Jenny, Jenny

[caption id="attachment_562" align="alignleft" width="300" caption="Beautiful Jenny and her handsome beau, Darryl"][/caption]

When we lived in La Grange, we were fortunate enough to live across the school playground from our favorite La Grangians--The Behms.  Ironically, it took us a while to actually realize we had such a gem in such close proximity.  I kept running into Jenny and her daughter, Bella around town.  Finally at a La Leche League meeting we began chit chatting about how funny it was that we kept running into each other when we realized we lived right across the playground from one another.  That's when it all began.

Jenny was one of the first people (don't worry, Susan, you were the FIRST) I called when Ellie was diagnosed with a brain tumor.  She came to visit us at the hospital and she wept

[caption id="attachment_565" align="alignright" width="300" caption="Jenny shares our love of books and dressing fancy."][/caption]

when she saw 20-month-old Ellie in a hospital bed.  She was the person I could call at the last minute if I needed a boost in my day, a drop-by visitor.  We used to meet at the playground in between our homes in the summer to play and Jenny would often sing "Avignon" on the swinging bridge.

When Ellie thew up at the library, Jenny was the one who helped me clean it up, even when the library staff refused to assist.  Jenny was the one who never bat an eye when Ellie was going through a phase where she wanted to take her shoes, socks and pants off when we came for a visit.  Jenny was the one who found a quiet spot for Ellie when she was overstimulated.

[caption id="attachment_128" align="alignleft" width="300" caption="Bella makes a phone call--Get me outta here, those Kennedys are crazy!"][/caption]

Even though both of Jenny's pregnancies were of the surprise variety (hope I'm not spilling the beans in revealing that), Jenny is one of the best moms I know.  She truly rose to the occasion of momdom.  She makes me want to be a better mom.  She treats her children with kindness and understanding, not judging them, but relishing them and all of their quirkiness instead.  She is one of those moms that understands how much fun it can be to be 3 and wear your PJs all day everyday (wouldn't we all love to do that??)  She would make her kids soup for an afterschool snack.  SOUP.  I think that officially makes her a SuperMom!

On a not-too-recent visit to Madison, she talked about how she had had the opportunity to reconnect with Ellie, but was not feeling as if she knew Ben very well.  She decided that she would spend the next day getting to know him.  I mean is there anything better than someone loving you so much that they want to get to know your children better?

[caption id="attachment_559" align="alignright" width="300" caption="Jenny & Darryl whisper sweet nothings to one another..."][/caption]

When Ellie was undergoing chemotherapy, Jenny wrote her letters almost weekly, including illustrations of yoga moves she had learned in class.  She even illustrated a chocolate croissant tree, and I think we can all agree on what a fabu idea that is!!  We turned her letters into a book entitled, "The Jenny Letters" which Ellie still peruses quite often.

Recently, the Behm household has become THE place to hang out in La Grange.  The last time we visited there were about 63 children who ran in and out of the house during our short stay.  When we left, Ben accidentally fell through the front screen door, Jenny nonchalantly said

[caption id="attachment_560" align="alignleft" width="300" caption="Jenny surrounded by her fans (including TWO Bellas)"][/caption]

that it didn't matter it was already broken, Ben just finished the job.  It was just another somewhat normal part of her day, having a child break something.

Occasionally, Jenny will tell me that she needs a "Kennedy" fix whenever she wants to come to Madison and go to our favorite spots (Lazy Jane's and St. Vincent de Paul thrift store).  We both adore thrifting and books and thrifting for books...

Once Jenny found out about my blog, she read it religiously.  Here is what Jenny wrote about the blog in a recent e-mail to tech support, "... tell debi i love love her new blogs, i am always laughing and crying in my coffee!"  The exact response I was looking for from my "public".  Some days, I am not sure if anyone is reading these, and then I think of how when Jenny first heard about my blog, she told me she ignored her family for the day to read all of the blogs thus far.  She kept thinking to herself, "Debi wouldn't want me to be doing this..."  As far as friends go, Jenny is the real deal.  I am so fortunate to have her in my life, I wish everybody had a Jenny in their neighborhood.

That's MY name too!

[caption id="attachment_478" align="alignleft" width="300" caption="Getting the giggles"][/caption]

One day when Ellie was maybe 3 or possibly 4, she announced that she no longer wanted to be called, "Betsi".  It was a "sad" name she informed us.  I had read in Mutant Messenger Down Under how the aboriginal people often chose a new name when they were entering a new era of their lives.  We were hopeful that Ellie was signifying that she was entering a whole new possibly less medically oriented era.  (It worked for awhile.)

When I named my daughter, Elisabeth, part of the reason I loved this classic, strong, beautiful name was because there are so many options for nicknames.  Beth, Elisa, Elsbeth, Lisa, Liz, Betsi, Ellie, Zeba.  So, Ellie took it as free reign to come up

[caption id="attachment_477" align="alignright" width="300" caption="More giggles"][/caption]

with a different name all of the time.  For example, one day we were in the grocery store and Ellie asked someone her name.  The woman responded that her name was Donna, to which Ellie, with much enthusiasm and excitement responded, "That's MY name too!"  Both Ellie and Donna were so excited by their mutual name, that I couldn't break it to Donna that Ellie's name was NOT actually Donna.

Every time we would go to the hospital, Ellie would arrive with a different name.  Then the name began to grow.  First, Zeba (means "beautiful" in Persian according to our friend Sezgi).  Then Zeba Beba Donna Sandy.  (Donna was from the Grease song line "as for you Troy Donnahue" and Sandy was after the main character.)  To this day, some of the doctors check in to see what Ellie's most recent name is so they will address her correctly.

[caption id="attachment_131" align="alignleft" width="300" caption="Falling over laughing"][/caption]

Here is a poem, written by Ellie's granddad (my dad) about her love of changing names.  It's entitled, "Granddaughter's Name"

When she was born we called her "Betsi" at first.  But soon for a new name she began to thirst.  Should she be limited to just one name?  Or have it changed or leave it the same?

She decide that "Zeba" was what she wanted to be.   A name she felt was happy and filled her with glee.

When she asks people "What's your name?"  They respond and ask her the same.  Granddaughter tells them its Mary or Betty Lou.  The name she gives is always one that is new.

Inventing new names becomes quite a game.  What's her name?  It's never quite the same.  Whatever her name is, I want her to know, she's my sweet granddaughter and I love her so.

When Ellie was undergoing chemotherapy, we ordered a song for her which included much mention of her changing names from "Songs of Love" (www.songsoflove.com)  Here is her song lyrics and you can click on the link to hear it http://njoybooks.com/huggle/sol.htm.

[caption id="attachment_487" align="alignright" width="300" caption="serious giggles"][/caption]

At the end of the namechanging era, Ellie asked if she could be "Trisha".  Now I went to high school with a Trisha who apparently had a sordid reputation.  My friend Kelly Kitchen told me that I should not under any circumstances befriend Trisha because I might get a reputation by association (that kind of thing happens in Kearney, Missouri, home of Jesse James.)  That was when I finally said that Trisha was not any variation of Elisabeth and maybe just maybe we could find a name that was a true nickname of Elisabeth. 

First, we decided on the name "Ella", which lasted for maybe a few months.  Then, when Besti Zeba Beba Donna Sandy Ella realized that her name could rhyme with her friend, Kelly, she decided she really wanted to be Ellie.  Then, when we suggested "Ellie" could stand for LE or Love Extraordinaire (what she truly is to us), Ellie was committed.  Although when we are around family or friends who have known Ellie all her life, they have no heck baby fire* idea what to call her.  Not to worry, Ellie is not afraid to kindly remind the individual of her most recent and most lasting name since the Betsi era.

Recently the topic of the day at school was what name the children would like to have if they could be called anything.  Ellie decided that she did not want to change her name, she liked Ellie.  She's already been there and done that, many many many times.

*an Ellie term created several years ago

Give me a break

[caption id="attachment_461" align="alignleft" width="300" caption="So many fun things to do as at toddler, it is exhausting!"][/caption]

One night recently, I came upstairs to bathe my children.  They were involved in their somewhat regular routine.  Here's how it goes.  Ben does something.  Walks or talks or growls or spreads his legs apart.  Ellie begins to yell at Ben to stop or move.  Ben, enjoying the sudden onslaught of attention proceeds to do more of the offending behavior.  Ellie begins to cry loudly.  I intervene.  AND Scene. 

So as I come up the stairs, hearing my children enact their scene, I became frustrated.  I was tired.  So tired of this routine.  You know when you feel more tired than you have ever felt before.  All the way down to your bones.  Couldn't we do something different?

[caption id="attachment_486" align="alignright" width="300" caption="A far happier bath moment..."][/caption]

I stormed into the bathroom and had Ellie get into the tub while shouting at my children about my anger and frustration about the scene at hand.  Both of my children listened to my tirade.  Suddenly, Ben ran up behind me and gave me a huge hug to help me "feel better" faster.   Both of my wise children knew that I was having a moment and that it would pass.  They knew that by gently loving me and listening, the moment would pass more quickly than trying to force me into a different space.  I was not a bad mommy, I was having a moment of tiredness, frustration, anger that we all have in these human forms.  How absolutely wonderful to have children that can help me to remember that those messy moment shall pass and we can love one another through them. 

[caption id="attachment_354" align="alignleft" width="300" caption="Another smiley bath moment"][/caption]

A few years ago, Thom, Ellie & I attended the Wolf Family Reunion organized by my aunt in Denver, Colorado.  We stayed with my cousin who had a lot going on--3 children, was recently divorced and had a medical condition that had taken a lot of recovery time.  Anyway, when she would forget something or not live up to her children's expectations, she would say, "Bad mommy".  It was a verbal "time out" punishment.  A self-initiated spanking.  It was as if she punished herself enough, she would be motivated to do things differently. 

I recall how I used to feel so badly when I would have a bad morning or moment, it would ruin my entire day.  I would spend the rest of the day trying to "fix" the

[caption id="attachment_232" align="alignright" width="300" caption="Turning our world upside down!"][/caption]

relationship mess I had made.  But, the more I tried to fix, the more I was motivated by guilt, the less of the super mommy that I wanted to be emerged.  That ideal mother that we all strive to be who cooks and cleans and nurtures everyone around her.  Who never tires or has a bad hair day or passes gas loudly or stinkily.  June Cleaver.  Marian Cunningham.  (These are television mothers from a by-gone era for those of you who are unfamiliar.)  How can any of us humans ever live up to this image?  And would we be incredibly boring to all of those around us if no one ever got to say, "What IS that smell?" 

One day when I was having a challenging mothering day, I realized that my anger and frustration had nothing to do with them, but had everything to do with what I was struggling with right then.  I suddenly realized that all the things that my mom did or did not do

[caption id="attachment_438" align="alignleft" width="300" caption="Super Mommy here to provide a shoulder to lick on!"][/caption]

had absolutely nothing to do with me.  She is an angel in a human costume with all of the challenges that go along with being human, just as I am.  It freed me up to be the mom that I wanted to be by allowing my own mom to be human, rather than the idealized mom. 

There are still many many moments that I struggle to be the mom I want to be, but they are easier to pass through when I allow myself the opportunity to feel all myriad of emotions, rather than trying to stifle them.  Ironically, it is when I allow myself to have these human experiences that I can get back to being the mom I want to be so much faster than when I used to try and punish myself back into it.  And when we do have crazy moments, the sweet snuggles and connecting and discussion of what happened, almost make it worth while.  Almost.