The Gift of Not Giving

A few weeks ago, Ben's teacher told me how they were so impressed at a drawing Ben was working on.  He had explained to his teachers how the train he was drawing was taking items to the "poor" people.  His teachers were way impressed with how generous this was.

Right after that, we took a sojourn to Walmart.  I "paid" Ben for this trip to Walmart with a tiny Lego set.  It was the most exciting part of his weekend, even more exciting than the Wish Walk that Sunday.  As we were leaving the store, we came across a humongous jar (taller than Ben even) with dollar bills and coins in the bottom.  Ben, who has been pondering ways to make money, inquired what this money was for.  I read the sign and explained that it was for a children's hospital.  Ben scoffed.  He was appalled.  He said, "I would NEVER give money to them."  In that moment, I was tired and hot and possibly slightly hungry and was working hard to get us out of the store.  (I can only tolerate so much of the Walmart vibe, I don't know why, and particularly this Walmart which is a bit run down.)

[caption id="attachment_4276" align="alignleft" width="225" caption="Ben in a tree on Capital lawn"][/caption]

At first I felt as if I should explain to Ben why it might be a kind act to give children in the hospital money.  Then I realized that his experience of Ellie being in the hospital was not something that was bad, that we needed help with.   Coupled with that is how much fun Ben always had at the hospital, it was a place of total abundance, why would you possibly give more money to that?  There was a kitchen stocked with tiny, kid-sized cereals, milks, juices, bagels.  Free dinners with yummy bread sticks were provided for us frequently.  There was an Ice Cream Cart on Tuesdays.  To top it off, when he went to sibling care he was showered with love and attention and lots and lots of craft/art projects.  Plus he witnessed all the gifts, toys and blankets, given to Ellie.  He was scoffing, because from his experience this was the LAST place that needed more money.  It filled me with appreciation that this was his take-away from the hospital, rather than a much more dismal, dreary, sad picture.  Suddenly something that initially felt like a "problem" transformed into an "ah-ha" moment.

Bob

I adore Target, like the hospital, it has its own time zone.  An hour there feels like five minutes.   Which makes it impossible to "drop by".  A total escape, a mini-vacation (or a maxi-vacation depending on how much is spent).  This week while at Target, Lotta spotted Spongebob Squarepants, one of Ben's current favorites.  She ran over to the sign and began pointing.  I said, "Oh it's Bob!"  and she replied with "Bob!" perfectly enunciated.  I was amazed and delighted at her brilliance.  For the rest of the day, I tried to get her to restate, "Bob", on command for other potential admirers.  When she did get it, we all clapped and yelled "Yeah!" (what she insists upon whenever she does something exceptional, which is, let's be honest, all the dang time).  Now, everything but everything is "Bob".   Except for Elmo whom she refers to with the baby sign for hippo, a wide open mouth.  Go figure.

Whatever

[caption id="attachment_4252" align="alignleft" width="300" caption="Ellie sporting a dress."][/caption]

 

Earlier this week, I arrived at Ben's school for pick-up.  When what to my wondering eyes should appear but Ellie's dress walking down the hall.  Of course, without an Ellie in it.  It was so shocking.  I mean how dare some other little cutie pie wear Ellie's Land's End dress and shock me like that.  I began to cry as Ben approached.  I was quite certain had he been older he would have given me a big old eye roll, there is no crying at school after all (also no kissing.)

I had the pleasure of having brunch at this amazing French restaurant near the hospital with Esther Sunday (I apologize for that clunky sentence, yikes).  As I waited at the intersection where I would've turned to go to the hospital, the desire to turn, to go see Ellie overtook me.  How wange (weird strange) to WANT my daughter to be in the hospital.  When I did make it to the restaurant, Esther and I sat and talked and cried and reminisced about Ellie.   Many of the people I see on a daily basis know OF Ellie but did not KNOW Ellie.  How refreshing it was to connect with someone who KNEW her and LOVED her as well as Esther does.

The thing that strikes me these days is how my life seems to be a great divide.  At times it feels as if Ellie and that part of my life never even happened.  Then I want to call someone (usually my sister or my mom if she should happen to be in the country) and say, "Where was Ellie last year when you came to visit over fall break?"  Just to make sure I didn't make that beautiful girl and all she did up.  It feels like two separate books, rather than separate chapters.  Our lives are so incredibly different now.  Ben attends a different school than Ellie, so when we walk home from school, it is something totally new.  We are creating new memories.

I feel so dull at times, which is not the speed I typically run at.  I suppose my inner Scarlett O'Hara would be proud at how I have embraced my melancholia so dramatically.  Typically, I am a cheerleader.  I am excitable.   I feel like "whatever" at times.  Nothing seems as shiny or exciting as it used to be.  Whether something happens or not, I feel "whatever".  Is this what it feels like to be an adult?  I don't think I want to grow up then.

[caption id="attachment_4243" align="alignright" width="300" caption="Lotta tries to catch the water."][/caption]

Last week I attended a Make-A-Wish volunteer appreciation dinner.  A man spoke about his son's wish.  His son had had bone cancer, which is apparently extremely painful.  The way he talked about his son, his bravery, his kindness, was such an amazing tribute to him, allowing his gifts to live on.  That is what I want to do with all that Ellie taught us, keep passing it on, spreading her words and laughter and love.

As Ellie lay dying, I tried my best to absorb her.  To be totally and completely present.  To breathe her into me as best I could.  To store all of that up for a day like today when every part of me is missing her.  But it's like trying to hold onto sand or water, it slips through your fingers and vanishes.

Lotta and Ben Sitting in a Tree...

[caption id="attachment_4244" align="alignleft" width="225" caption="Ben and Lotta are something special."][/caption]

Lotta is really into kissing Ben (on the cheek people, no intentional exchange of fluids).  Only Ben.  Ben is really into being kissed by Lotta.  That is basically what they did all weekend.  Ben wants to bring Lotta to school as his show and tell item.  He can't think of anything he likes better.  The two of the them together is really something magically special.  I feel appreciative every single day, thinking of how much they enhance each other's lives.  Could a mother want anything more for her children than that?

Whenever my phone rings, or Thom comes home, Lotta does this quick jump up on top of me.  As if she is saying, "Be sure to take me with you!"

We went to the Halloween party at the Y on Friday.  They had a DJ and loud music, Lotta was amazed.  For awhile, she just had me hold her while she looked around, her mouth wide open, a look of pure astonishment.  (Sort of like when I

[caption id="attachment_4245" align="alignright" width="225" caption="Lotta dressed up in her birthday suit. Can I post nudey photos here?"][/caption]

explained volcanoes to Ben, he couldn't imagine anything being greater than that--fire suddenly spewing forth from the earth. )  Lotta has been working on her spin and walking backwards, which means more bruises on her face.  For some reason, it always seems to happen on the left side.

On Sunday Ben wanted to set up a city with his blocks.  He knew that Lotta would immediately knock down any city he would create.  So he decided to wait until Lotta napped.  It just seemed incredibly mature that he was able to think that through.  I cannot imagine anyone else he would make such compensations for but Lotta.  He's got a lotta love for that Lotta.  (Seriously how could you not??)

 

 

 

 

 

Did you want to talk about condiments?

We are at the point in our ketchup bottle where it has to be stored upside down in order for any ketchup to actually emerge from the bottle.  You would think I'd lived through the Great Depression the way I like to get every last drop out.  Ben is into a stage right now, where he is into condiments.  Ellie went through a similar stage, when ketchup and mustard were considered actual food groups (I took her to the Mustard Museum she loved it so much at the time.  The Museum was a mistake--bringing a 4-year-old into a place filled with bottles.  Not fun, no matter how much you adore the condiment.)  Ben has expanded his condiment loves to--peanut butter (he proudly helps me clean it out at the end of the jar), jelly, honey, big lakes of syrup, and of course ketchup.

Before bath time yesterday, Ben reached into his pocket and pulled out a ketchup packet he had obtained from school.  He explained that he knew we were almost out of the condiment and so had taken matters into his own hands (or pockets).  I reassured him that we did in fact have another bottle in the pantry, so he could leave the ones at school.

Lotta has been sickly this week--throwing up and a runny nose.  She keeps bringing me her shoes.  Not sure what she is trying to tell me.

Lotta is into practicing her balance these days.  She likes to do this by stepping on items that are not normally considered items that should be stepped on.  For example, yesterday she turned the abacus on its side and stood on all the beads.  This morning she took a toy piano given to us by Esther (when Ellie fell in love with it at her house, isn't that just like Esther?) and tried stepping on it, balancing by keeping a firm grip on my hand.

[caption id="attachment_4236" align="alignleft" width="300" caption="ellie at 9 months"][/caption]

So many times recently I find myself pondering how much Ellie would have loved Lotta right now.  She would have loved helping Lotta discover which part is her foot or head or nose.  She would have loved Lotta's babbles and pointing  (just as much as she would have despised Lotta going through her books and dolls).  Even though I have this tremendous gift of Lotta here right now, sleeping upstairs as I type (she tends to rip the keys out of the keyboard if she is awake), still I miss desperately those days of playing office with my cudorable (cute adorable) first born.  Today is 9 months since she left.

I lean towards the spring color group

Today is Thom's birthday.  As Ben exclaimed last night, "Can you believe Daddy is younger than you?"  To which I replied that it was quite amazing, I seem so youthful, don't I?  When he mentioned this the first time, I explained that I am a "cougar" and he really liked that, seeing as how he enjoys predatory animals.

Today is also the day, 10 years ago, that Ellie had her first brain surgery.  (If you are just joining us, it was an emergency, she was on the verge of brain damage.)  Betsy C., Thom, and I sat that long day together, wondering what the future would hold.  It feels so strange to be that future we were contemplating then.  I feel so fortunate to have had both Betsy and Thom with me all along this journey.  It would not have been as jilled, meaningful, wonderful without the two of them.

This month I am participating in a Tiara teleseries about self-compassion.  Here is an e-mail I sent my group yesterday, "The pain I noticed when I sat for a moment was desperation.  YUCK!!!
Desperation does not look good on me.  (Not with my coloring).  This feeling of desperation to see Ellie,
feel her, smell her, touch her is so insistent.  And so highly uncomfortable.  I
find myself running to my every-day-is-an-emergency dark chocolate stash because honestly I feel if I sit
with that desperation, that wistfulness, I will fall into a well of despair.
All those never agains keep piling up--never again to walk together, go on a
"date", read a story, pick out an outfit...(Am I sounding dramatic?)  I have
never wanted something so much, so badly that I cannot have.  I really hate it,
which sort of seeps into hating myself."

Here is what my fabulous friend, Amy, wrote back, it helped me to look at this yearning a bit more compassionately.

You’re an inspiration…a mommy role model for me. I still marvel at how you can
so easily flow through your day with Lotta in your arms or strapped on or in
your lap. I’ve seen you two be so physically and emotionally connected. Ah…I
just created a parallel in my mind – don’t know if it works for you – yet, how
do you let go of your physical connection with Ellie when you did such a good
job of being in tune and connected with her when she was physically
here?

I love how she makes me sound like Sacajawea, strapping my little papoose on and taking a little jaunt across the continent.

 

 

A Whole Decade of Brain Tumoring

[caption id="attachment_4212" align="alignleft" width="225" caption="When Thom discovered he does not like my hair bobbed."][/caption]

Ten years ago today, Ellie was diagnosed.  Three years ago on this day I wrote a blog, recalling the experience.  As I re-read the blog, this is the part that struck me (is it ok to quote myself?  Should I put quotes in quotes?)

I recall thinking after Ellie's initial surgery that I would never ever recover from it.  The whole experience left me feeling unmendable in some way.  But, here I sit today, playing office with Ellie (that's where I work on something and she works on something as if we were office mates.)  Sure, sometimes I still feel sad or despondent, but those times are much much less than the times that I feel in awe of our lives.

I just finished reading a profound book entitled, About Alice by Calvin Trillin (2006).  Alice & Calvin (husband and wife) worked at a camp each summer for children facing serious medical challenges.  One year Alice befriended a little girl they called "L" in the book.  L was unable to grow and unable to digest food.  Alice wondered what the parents had done so that a child facing such severe health challenges could be so magnificent.  As they were playing duck duck goose, Alice decided to sneak a peak at a letter from L's parents.  In the letter, L's parents said, "If god had given us all the children in the world to choose from, L., we would only have chosen you (p 66)."  Although I don't always reach it, that is what I strive to show Ellie.  I want her to feel, that she is, as Madonna so aptly put it, our shining star.

I am amazed right now that I have spent more time being a "brain tumor" mom than I have being any other type of mom.  No wonder it feels wange (weird strange) to not have this additional responsibility around me.  How ironic all the years I spent wishing for the tumor to be gone.  Then when it was gone, when Dr. Iskandar was able to (almost) remove the entire thing, then Ellie was gone too.  It was as if the tumor was so essential to why she came here that without it, her job was complete.

 

 

 

 

An empty baby shoe box, a tiny board book, a tiny plastic dinosaur, a buzz lightyear clock

As I was unearthing our green room, I found a small Pooh Bear backpack filled with the items listed above, packed by none other than Ben himself.  Can you fathom what he was planning?  And if you know Ben, he had a plan and it was something BIG.

He has been thinking up ways to make money recently.  One of his ideas was to sell some of his toys at a yard sale.  He was super excited, in a way only Ben can be, to have said sale.  I have tried again and again, most of the summer, to discourage the yard sale.  Last Saturday when we returned home from Kids in the Rotunda (great FREE performances for families every Saturday morning during the school year), I relented and he set up shop.  Alas, he had no customers.  After I put Lotta down for a nap, I discovered Ben, his toys all set up on a HUGE box, Ben laying (lying?) under our big front yard tree.  Although he was willing to try again, in the name of making money, he explained that he had not had fun.

Which brings me to the point of what I was pondering.  How do I support Ben's fantastically terrific ideas and, at the same time, allow myself to be not so fond of some of them.  Like when he wants to bake without a recipe?  Which he thoroughly enjoys as much as I thoroughly despise cleaning up the mess that inevitably occurs after such a creation.  (Did you watch Modern Family last week with a similar theme?)  My dad allowed us to create "everything" cakes when we were growing up and we had super fun doing so.  Yes, I have tried the whole, "We can play this only if you clean up the mess you have created."  Unfortunately, what happens with that great intention is he is completely motivated to clean up before we begin and completely unmotivated after the play has ceased.  (Sort of like the joke Jerry Seinfeld tells about how when the bill comes after eating at a restaurant your motivation to pay is so much less than when you were hungry ordering the food.  I don't think I said that right.  When Jerry says it is is totally hilarious.)

I decided for now it feels slightly better to me to allow him to carry out his fantastical ideas (not the one, however, about us turning our house into a restaurant).  Because the more I try to convince him that his idea will not work, the more he is dead set on accomplishing said idea.  I love that he is so exuberant, so filled with a zest for life.  I love his enthusiasm.  As I have said previously, I do not like feeling like Rabbit in the Winnie the Pooh story, "Unbouncing Tigger".   It doesn't feel good to be the "bubble buster", the party crasher.  I want to be the cheerleader, the encourager.

When I inquired of Ben what the bag was packed for, he lit up, saying he and Lotta were going on an adventure.  The tiny book was about animals to help them on their safari.  He then went on his way to create this experience for himself and his sister.

I think Lotta is throwing away all of the toothbrushes I am buying for her.  At one time  there were at least 5 around here, now there are none.  But that is another story all together...

Why don't I feel better?

Ben loves to photograph me making emotional faces. I think this one is a sad face.

Remember in the Sound of Music (one of Ellie's favorites) after Maria leaves and little Gretal wonders why she doesn't feel better yet?  That is how I often feel as of late.  Little Gretal's voice in my head saying, "Why don't I feel betta?"  Or funnier still, Michael Scott's face (from The Office) saying, "Oh, this is gonna hurt!" as he suddenly realizes how difficult it will be for him to move away.

Nothing feels quite right.  I imagined getting out of bed would be next to impossible after Ellie passed.  Instead, getting dressed is so hard.  I feel like I am 13 again (not a good year for me!)  Typically, I love picking out outfits, it feels like wearing art, making a statement, fitting the character I am going to play that day.  But lately, everything I try on just feels so wrong.  It takes me forever to finally just wear whatever wrong feeling outfit I put on last.  Geesh.  I mean I was able to figure out what to wear on a brain surgery day.  Now I can't even figure out what to wear on a Thursday.  Then to complicate matters further, it is 40 in the mornings and 80 in the afternoon.  Which means either layers or multiple outfits.  Too bad they don't sell outfits for adults like they do for little kids, where the socks, shirt and pants (maybe even a headband or hat) are all included.  Maybe I should switch to jumpsuits every day?  (Might make breastfeeding challenging!)

Thanks to all of you who requested to be added to my "emergency contact list".  Made me feel quite loved.

 

Lots of friends lately have commented on how much Lotta looks like Ben. This is Ellie at around 2 years.

Recently a friend shared how she'd read that the hardest part of losing someone you love is thinking about the rest of your life without that loved one.  This definitely feels like a seriously sad thought.  However, I think what hits me is how I want Ellie here RIGHT NOW.  That enormous desire to jump back into the past and be with her once again.

On Sunday as I was in the shower, I suddenly had the feeling of being with Ellie wash over me.  That indescribable feeling I had of playing office with Ellie, the feeling of her being in the room.  THAT is what I miss most.  And as I realized this was what I was missing, I felt empowered knowing that I could work towards this feeling any time.

 

Here is Lotta a couple of months ago. Imagine her without all the food on her face...

Then came today.  Laying in the dental chair early this morning, a tiny tear started to roll down my check.  I felt like Patrick Kyle, when he felt teary and he yelled at his tear to, "Stay in there!"  But once one tear started to emerge, many others joined in.  Until the poor dental hygienist was afraid she was hurting me terribly.  I think this grief is less wet when I stay on the go--it catches up with me when I am lying still.  Which I suppose is "good" to get some out.  However it seems hard to shake it off for the rest of the day.  It's like a tornado that sweeps up everything in its path.  But a slow moving tornado, as everything seems so slowed way down.

[caption id="attachment_4190" align="alignright" width="300" caption="Ellie or Lotta? Either one would adore that bun. (did you notice how that rhymed?)"][/caption]

Unfortunately, my emergency contact (my super sensational sister Susan) is currently on her way to Disney.  How could I call all weepy-fied and rain on her Disney "everyday is happy all the time and every night is fireworks parade"?  Seriously, I don't wanna be THAT guy (or woman, I should say, Ellie always corrected us on using the term "guy" for a female).  OMG and it is so challenging to call ANYONE when I am in this weepy space.  I don't like myself much and feel like maybe I should just keep this all concealed (which is why I am blogging about it.)

I ended up calling my brother, Kip, also part of my "A" team, interrupting his bike ride.  I was sobbing so hard when I called that he thought something had happened.  After conversing for a few minutes, I felt much much better to continue functioning and avoiding the mountains of laundry that have somehow accumulated once again in the green room.  Best go and attend to that while Lotta is napping.

Great Ants!

Were you afraid my house had been taken over by ants?  In the midwest we pronounce "aunts" like the insect, "ants".  I have often commented how our children have spectacular aunts and uncles, not a mean or crazy one in the bunch.  Which started me pondering my own aunts, following are some of the highlights...

[caption id="attachment_4180" align="alignleft" width="300" caption="Linda works on the garden with Betsy and Mike."]

Suzanne and my mom.

1.  Aunt Suzanne