Got chocolate?

[caption id="attachment_4523" align="alignright" width="225" caption="Chocolate? What chocolate?"][/caption]

Friday morning, I handed Lotta a pain au chocolate (think chocolate croissant here without the crescent shape and with hard chocolate bars rather than the more soft, pudding-y chocolate).  I was fully anticipating "helping" Lotta with her yummy treat once she had finished (what Esther refers to as bottom feeding, but food as delicious as this could not be considered anywhere near the bottom!)  I looked up from my (boring) granola to witness Lotta pulling out the chocolate and immediately consuming it.  I suppose it makes sense since the milk she consumes from me has probably tasted like chocolate milk for at least the last 6 months (have I mentioned the dark chocolate peanut butter cups from Trader Joe's recently?)

Surprises...

Some of the numerous things that have surprised me over this past year...

1.  Ben wants more.  I mean that's not that surprising is it?  Until you hear what he wants more of...It was Ben who mentioned on January 25th that he felt we had NOT done enough to honor Ellie during the 13 days.  Which is ironic because the whole time I was concerned that Ben would feel jealous if we made too too much of a fuss.  Guess I erred on the opposite end of that continuum.  We talked about what we could do the next day, Ellie's birthday, to honor her.  I explained how Ellie had this joke when anyone would say, "Have a nice day!"  She would respond by saying, "It's too late."  Pause Pause.  "I already am."  So when Ben boarded the bus on Ellie's birthday, Thom automatically said, "Have a nice day."  Ben yelled back, "It's too late!"

2.  Feeling Oscar-ish.  Grief often presents itself as grumpiness ("Oscar-ish" Ellie would have said, after the grumpiest of them all, Oscar the Grouch).  It's not necessarily the falling down on the bed sobbing kind of thing you would anticipate and see in movies, but rather a lashing out at whomever happens to be nearby.

 

Happy with her books.

3.  Quiet voices.  The soft spoken, whispery messages have been another surprise to me.  At times, I will think a thought and have the distinct feeling that this thought is one from Ellie (an elliought or a thellie?).  Again not dramatic like I would have predicted.  It doesn't occur as a big bolt of lightening, followed by the crash of thunder, but instead it is quiet, I have to stop to be able to hear.

Recently, I was pondering how now there are activities we do as a family that we would not be doing if Ellie were alive.  It feels wange.  Almost as if I traded Ellie in for this new found freedom, a trade I would never willingly agree to.  Suddenly the thought came that we were BOTH holding each other back--that Ellie was ready to go and that it was time for our family to do some of those other activities.

Around Christmas time, I was lying in bed with Lotta, missing Ellie.  When suddenly I had another Ellie thought, "But I waited till Lotta was born to leave."  That was one of the many great gifts from Ellie, to wait until we had a Lotta Joy in our lives for her to make her exit.  The gift from Ben has been how much he adores this little package.

4.  The continual loop of grief to laughter and back again....This week, Lotta and I traversed to Willy Street Co-op. I was feeling tired and grumpy and out of sorts.   For some reason, grocery stores seem to elicit this response from me.  The check out area is really close to where Ellie and I used to sit and watch the clouds on our dates while we had a snack.  I felt myself near to tears, imagined myself just having a good wail right there in the

[caption id="attachment_4517" align="alignright" width="300" caption="Another favorite--bubble wrap!"][/caption]

check-out lane, but instead held it together. Then as we walked to our car, I saw the firestation next door and suddenly thought of telling Lotta, "We used to have them (meaning the firefighters) over all the time." (Remember when we had to keep calling 911 to come pick Ellie up when we couldn't get her to wake up?)  This thought seemed so incredibly absurd to me, made me laugh in spite of myself.

5.  We're rich!!!  It can seem so utterly surprising at times that life keeps happening, regardless.  My blog is such an example of this--one blog about my grief, another blog about the silly things Ben and Lotta are up to, another about an Ellie memory.  It is all happening NOW, all the ups and downs and in betweens.  Even boredom, which doesn't even seem like it should be ALLOWED when you realize that death is a reality for all of us (is this not a big part of grief becoming friends with THIS inevitability?).  The laughter and joys are that much richer now because the contrast of the despair is there.  I feel myself at times, slowly, reaching for the otherside of this grief.  Thank you, Ellie.

 

 

Closing

[caption id="attachment_4391" align="alignright" width="300" caption="Lotta wears "bob" on her head."][/caption]

Ellie had a fixation with drawers and cabinets(just like my Aunt Linda.  I say this because when we sent out an engagement photo there was a cabinet door open in the background which we failed to notice.  If only Aunt Linda had taken the photo, the door definately would have been closed.)    Ellie absolutely positively could not stand if a drawer or cabinet was left open, not even for a minute.  If I went to retrieve a washcloth for her while she was in the bath tub, turning around to hand it to her, she would beg me to close the opened drawer.  Even if a dresser drawer was only opened slightly, Ellie would come into the bedroom, making sure every single drawer was closed completely.  She felt more comfortable, more peaceful if she had accomplished this task.

Mrs. Zwart utilized this talent brilliantly at school.  Ellie's job every day was to walk down the hall closing locker doors.  Mrs. Zwart said she actually had to put a limit to it, otherwise Ellie would've chosen to spend the entire school day closing lockers.  When Ellie was finished with the task, Mrs. Zwart would say, "What would we do without you?"  Ellie would respond  with a shrug, "I don't know," as if to say, "Man this place would be a MESS without me."

Lotta apparently has the same gene.  Even at 17 months old, she quickly closes all open drawers and cabinets.  If I have neglectfully left a drawer or cabinet door open, Lotta will wander around the house busily closing anything ajar. That is unless she is trying to release the contents in the cabinet or drawer.

One day, we heard Lotta scream from where the bathroom where she had been playing.  When Thom raced into the bathroom, the stepstool Lotta had been standing on had slipped and she was hanging off of an open drawer.  Maybe she learned the dangers that day of opened drawers and now works to keep them at bay.

 

Making Fun

[caption id="attachment_4394" align="alignright" width="225" caption="Walking home from the bus."][/caption]

Ben is so great at making fun for himself.  This school year, unfortunately, he has experienced other kids making fun of him.  Ironically, it was Ellie whom I was always afraid that this would happen.  So afraid in fact that I didn't even want to put her in the school system.  Instead, she was embraced as a class mascot, taken care of and loved.   Ellie might not even have noticed if someone was making fun of her, it just wasn't in her realm of possibility for people to want to hurt one another.

One day this fall, Ben descended the bus stairs and told me how one of his bus mates made fun of him for crying.  During the walk home, we discussed what had happened.  Last year when Ellie was home bound, the bus changed its route so that Ben could be dropped off in front of our house.  I think the change happened very suddenly and I did not explain to Ben what was going to happen before it occurred.  Ben panicked when he did not get off the bus (he gets that from

[caption id="attachment_4396" align="alignright" width="225" caption="Took this photo to see if Lotta was happy being strapped to my back (usually she is strapped to the front)."][/caption]

my side of the family) and began to cry.  Apparently a second grader  (he is in first grade) told him he always cried and needed his mommy.  As Ben was describing this, we began brainstorming what he could say to such an accusation.  We discussed how teasing can only happen if you THINK you are being teased.  "So?  Everybody cries."  Was one  response we practiced.

Ben seemed to feel somewhat resolved after our conversation.  I, on the other hand, fretted about it for the rest of the day.  I felt upset that Ben had been teased about that time in our family, a time when it felt like we were particularly raw and vulnerable.  I couldn't let it go.  I imagined myself boarding that hot (it always seems to be HOT on the bus doesn't it?) throwing my hands up and yelling, "LISTEN UP KIDS!!  CAN YOU PLEASE GIVE BEN

[caption id="attachment_4491" align="alignleft" width="300" caption="The lost teeth and the glasses make me extra protective..."][/caption]

A BREAK??  WE'VE HAD A CHALLENGING YEAR FOR CRYING OUT LOUD!"

The next day when I retrieved Ben from the bus, I walked up the steps and spoke with the bus driver.  I explained that Ben told me he had been made fun of.  The bus driver shook his head sadly and told me he would be on the look out.

As I came down the bus steps, Ben questioned why I had gotten on the bus, something I had never done before.  I answered that I had mentioned the girl making fun of him.  Ben said, "Oh that happened last year."  Oops.  "But, it's good because it will probably happen again," Ben supposed.

Which led to a conversation about, maybe, the most disturbing part of the teasing.  He said that his 2 favorite bus buddies laughed when the 2nd grader teased him.  I recalled the time with Ben when he laughed when I was crying about Ellie.  I told him I absolutely knew he was not laughing because he thought that was funny but instead because he felt uncomfortable.  I was sure that the girls' on the bus reaction was the same.  It truly felt as if Ben had closure on this event that he had obviously been thinking about since the previous year.

But wait, the saga continues, about a week ago, Ben was punched by another kid on the bus.  Now, I feel like I am equipped to handle discussions of what to say or what to do when teased, but when someone just punches you in the mouth for saying "Hi", I feel ill equipped to provide any kind of guidance.  Maybe this is normal little kid behavior.  Nevertheless, I feel strongly that if Ben is getting punched on the bus then I am not fully doing my job. Plus, he has a bunch of teeth missing and new glasses which just somehow makes him look more vulnerable.  I feel sort of like Ellie in these matters, shocked that anyone would even THINK to do such a thing, much less carry it out.  I keep imaging how shocking it must have been, even to Ben who loves predators.

[caption id="attachment_4498" align="alignright" width="225" caption="Do NOT mess with this lion!!"][/caption]

Once again, I had visions of stepping on that bus and giving those kids a piece of my mind.  Instead, I contacted his teacher who in turn contacted the principal.

When Ben stepped off the bus yesterday, he told me the principal boarded the bus and spoke with the boy who punched him to insure that the boy knew this behavior would not be tolerated.  Ben felt shocked to discover that the principal knew the name of every single kid on his bus.  When I suggested that he could tell the bus attendant if anything happens again, Ben thought it would probably be more effective just to go straight to the principal.  Now he's got a friend at the top who can get things done (reminds me of when I learned who to ask for what at the hospital).

Throughout this whole incident, it has felt like the adults in Ben's life have risen up to provide him the support he needs to feel safe on the bus.  Yes, we all wish it hadn't happened in the first place, but how great for Ben to feel so heard and supported by the adults surrounding him.  All of these bus incidents reminded me of what a ferocious momma bear I can become if I feel my bear cubs are being threatened.  It doesn't happen often, but wow is it ever powerful when it does.  GRRRR.

 

 

The Land of Uneven Surfaces

[caption id="attachment_4485" align="alignleft" width="300" caption="Ben and Lotta in Betsy Cs kitchen."][/caption]

In order to begin our 13 days of Ellie, we took a trip to Chicago.  We spent the night with Betsy C on Saturday night.  She created a beautiful and yummilicous meal for us out of yellow, orange and red foods (notice some of Ellie's favorite colors) around her house were roses of pink, orange, and yellow.  She even ordered crab rangoon for Ben, his own separate order, knowing that Ben is not at all keen on sharing food.  We felt completely honored by all of these gestures.

Sunday Ben woke up early and watched hours upon hours of Sponge Bob Square Pants with Betsy C. (his favorite part of the trip since his

[caption id="attachment_4486" align="alignleft" width="225" caption="Another fabulous service provded by the Betsy C. Hotel is hairstyling."][/caption]

television viewing is usually limited AND we don't get Sponge Bob.)  Then we stayed at a swanky hotel downtown on Sunday night (yeah groupon!!!)  To honor Ellie, the hotel was a suite.  Staying in a suite was the only way to go with Ellie because she was up and down all night, in one room ALL of us were up and down all night.  We ventured to the art museum, where Ben looked for dragons and enjoyed viewing the miniatures display, while Lotta discovered some wavy pillows and a great ramp (remember how she adores walking and stepping on uneven surfaces, even going so far as to wear only one boot in order to create an instant uneven surface).  We rode two trains (an elevated and an underground) to get back to our hotel, which was highly highly exciting for Ben (and Thom surprisingly).  For dinner Betsy joined us for some of the best sushi ever.  Once our stomachs were nice and full, Thom and Ben went for a swim (recall the rule according to Kramer:  never swim on an empty stomach?) where Lotta re-discovered her love of puddles.  Once again, Lotta is most definitely a landlubber, but has discovered that jumping in puddles

[caption id="attachment_4487" align="alignright" width="225" caption="Ben on firefighter pole at the Chicago Children's Musuem."][/caption]

or creating puddles by dumping out water is pretty cool.

On Monday (Martin Luther King, Jr day so there was no school), Ben woke up early and watched more cable television.  Ben and I ventured to Corner Bakery (which was on the corner, I wonder if they are always on the corner?)  where we purchased breakfasts laden with bacon.  Bacon is Ben's newest food discovery.  He is a bacon connoisseur.  It seemed that every item on the Corner Bakery menu is accompanied with bacon.  After perusing the menu, I imagined the cashier inquiring, "How many slices of bacon would you like with that coffee mam?"

After our bacon, we checked out of the hotel and walked to the Children's Museum.  It is the BEST children's museum we have experienced with our nation-wide children's museum pass.  Immediately we discovered a room filled with tires, tunnels, and wavy mattes.  With all those uneven surfaces to walk, climb and fall across, I was unsure if Lotta would see any other parts of the museum.  But wait, there's more!  There was a firefighting area, complete with a fire pole and fire truck you could pretend to drive and even slide down.  A big back yard with butterflies and flowers.  A water play area (where you will not be at all surprised to learn Lotta became extremely wet playing in the, you guessed it, puddles).  An inventor's station.  A snowman dressing area.  A little town.  A dinosaur dig.  There was even an art studio we didn't even have a chance to discover because my hunger took over.

Lotta got to experience the food she continually talks about,  popcorn in the form of Garrett's, apprently THE place to purchase popcorn n Chicago.  Ben got to have another one of his recent food discoveries, hot dogs.

Then we rode a bus (this is again highly exciting stuff for a 6-year-old) back to get our car which was still parked in the parking

[caption id="attachment_4489" align="alignright" width="225" caption="Get on the bus Gus (or Lotta, Ben, and Thom)."][/caption]

garage.  As we boarded the bus, I inquired of the bus driver if the price was the same as the train.  She told me no and then quoted the same price we had paid for our train rides.  I didn't argue because it is my policy not to anger or frustrate, if at all possible, bus drivers and librarians.

To top off the whole trip, Lotta slept almost the entire ride home.  When we returned home, it was one of those moments where I felt so glappy we had gone on our adventure AND at the same time so glappy to be home.  Now, as Lotta sleeps, I sit warm and cozy sipping drinking chocolate (yes, from Trader Joe's) while outside it is SNOWING.  Cozy.

Hidden

[caption id="attachment_4482" align="alignleft" width="300" caption="Lotta hiding underneath our desk."][/caption]

It all started during holiday break.  The first week of break we were BORED.  Yes, in all caps BORED, the worst kind.   We decided to venture to Target (you KNOW how I feel about Target, right?)  Ben has recently become interested in his appearance (Did I mention how he only wants to wear collared shirts, because this is what he has observed real mean wearing, specifically his Dad.)  Thus, while we were at Target, we decided to peruse the boy's clothes.  At this point in our adventure, Lotta had tired of the shopping cart and desperately wanted to explore.  (She needed to once again help them rearrange the store to her specifications.  I am shocked every time Target allows us to come back in the store.  I mean they have video cameras recording all of our visits, they know the destruction she has caused.)   I released Lotta as Ben and I continued to discuss sweaters.  I looked up and Lotta was no where to be seen.  Panicked, I shouted, "Lotta!"  and walked purposefully around our section.  I wondered what happens when you lose your baby in Target?

[caption id="attachment_4479" align="alignright" width="300" caption="Ben in a collared shirt, with a dragon tie Santa accidentally gave to his Dad. Notice how Lotta is using the stacking toys as bracelets? Fancy."][/caption]

I mean Lotta can't tell the manager, "My mother's name is Debi Kennedy, could you call for her over the loud speaker? Thanks ever so."  (She sounds British for some reason doesn't she?)  As more minutes passed, I became more flummoxed and widened my search circle.  Ben was helping, he eventually found Lotta standing, without making a sound under a pants rack.  We were pretty impressed with her hiding skills.

It soon became her routine when I would say, "Lotta let's go bye-bye."  She would race to our closet and hide under my clothes.  Last week, we rehearsed this regularly scheduled performance.  I looked below the clothes.  No Lotta.  Wange (weirdly strange).  I checked the shower stall (the only time Lotta will

[caption id="attachment_4474" align="alignleft" width="225" caption="Lotta all set to go in her new outfit from her aunt."][/caption]

purposefully emerse herself into water is for puddle splashing).  No Lotta.  I was perplexed.  I thought if I went downstairs she would, most likely, emerge from her hiding spot. Or at the very least call out to me.   As I started down the stairs, I spotted a tiny eye peeking out from behind the bedroom door.  Seriously, she was not making one sound.  If there is a baby hiding contest, I am quite certain Lotta would win, I'm not just bragging here.   I am giving my non-biased opinion as her mother.

Finally, I just have to say that I totally and completely felt big love on Friday from all the phone calls, text messages and e-mails!  (Thanks to Linda for explaining that less than 3 is actually the symbol for an emoticon heart.  How clever she is.)  I am in appreciation for all of your powerful words and wishes.  Thank you for helping me not just survive the year anniversary of Ellie's death, but truly feel uplifted (this is where Josh Groban would start singing, "You Raise Me Up" on my life's movie soundtrack.  Imagine that now.  Or better yet play it.)

No Heck Baby Fire Idea

[caption id="attachment_4464" align="alignright" width="300" caption="When Ellie would sit in this chair (I thought of it as "The Queens Chair") she would request to be scootched up precisely to the edge of the table."][/caption]

Monday I was fortunate enough to get to hang out with Ellie's third grade teacher, Mrs. Zwart.  We reminisced about Ellie for probably half an hour.  Mrs. Zwart shared how they had been working on teaching Ellie some life skills--eating with utensils, taking turns talking, using a napkin.  Ellie commented that the one thing she had not yet learned how to do was to push herself up in the chair.  Mrs. Zwart being the superb teacher she is, asked Ellie what she thought she could do about that.  (Mrs. Zwart always had this way of getting Ellie to answer for herself so that she was more committed to the solution).  Ellie looked at Mrs. Zwart, shrugged her shoulders and said, "Heck if I know." (A phrase Ellie used

[caption id="attachment_4465" align="alignleft" width="300" caption="Ellie with a cow from Uncle Kirky."][/caption]

for awhile, was "I have no heck baby fire idea".  I have no heck baby fire idea where she came up with it.)

As I was re-telling this story to Betsy C., it occurred to me that this is the attitude I need right now.  Friday, the day Ellie passed, is quickly on its way.  I do not know how I will handle it.  I do not want to handle it.  It feels sort of like before giving birth when I felt as if there was NO WAY I was going to be able to do THAT.  Not gonna happen.   I couldn't imagine it.  As the day grew nearer and did in fact approach, I somehow found the answers, courage, solutions, assistance I needed.  Even if right now I don't know how the heck I will, I don't need to know right now, when the time is right, I will.

The Benefits of Mood Swinging

[caption id="attachment_4455" align="alignright" width="300" caption="Mood Swinging ME"][/caption]

What a wacky wange week.  The last week Ellie was alive last year.  Tonight was the night Dr. Iskandar and Dr. Puccetti came to our house and officially announced that there was nothing more to be done for Ellie.  Tomorrow started the last 3 days she was with us in her physical body.  I find myself moody, trying desperately not to trip and fall into a bucket of gloom.  I am reminded of a time we were playing a game with Kip and Patrick, the question on the table was who was the moodiest person in the room (is it just me or does this seem like a frightening question to pose, particularly to someone moody?).  Every one else in attendance agreed that I should win that prize.  I vehemently protested (tho dost protest-est too much?), arguing that perhaps Kip should (even the suggestion seems utterly ridiculous now).  Today that protesting is coming back to haunt me.  I was contemplating (you know how I like to do that, right?) how being moody isn't all bad, I mean at least you know my dark mood is going to suddenly and erratically change back into a light hearted one right?  I do feel a bit badly for sweet Ben and how these

[caption id="attachment_4422" align="alignright" width="225" caption="Ben cannot help but laugh if you tell him not to."][/caption]

unexplained mood fluctuations must be extremely surprising.   

Speaking of Ben, last Tuesday Ben and Lotta and I went to one of our favorite neighborhood restaurants, Monty's Blue Plate Diner.  We saw a friend from Ben's school there.  As they were getting ready to leave, Ben suddenly said, "I learned how to talk to people from my sister, Ellie."  He explained that he used to feel shy talking to people he didn't know, but watching Ellie talk to others helped him to feel comfortable doing the same.  I agreed that Ellie taught me that no one is a stranger, everyone is merely a friend waiting to happen.  How marvelous that Ben noticed this magnificent gift from his sister.

13 days of Ellie

One of the mom's who lost a child described to me how every year around the time her daughter died her life was just a disorienting wasteland.  She just found she was unable to function.  She had decided that she wanted to do something differant this year--make a decision, rather than feeling as if that time just happened to her.  I appreciated and admired both of these ideas--setting aside time for all the myriad of emotions this time of year brings AND making a conscious choice of how to spend this time.

In order to honor and remember Ellie this year, we have planned 13 days of celebrating, from January 13th, the day she passed until January 26 the day she was born.  An opportunity to remember and celebrate all that Ellie’s life taught us.  Each day we will light candles to remember her (because BEN loves candles).  We invite you to join with us.  Listed below are Ellie inspired suggestions (maybe you have your own ideas to add).  Not knowing everyone else’s schedule, we decided it might be best to allow you and your family to choose which activities you will participate in and when you will do them.  (Perhaps you could print this page and cut it into strips and draw an activity at random.)  Please feel free to share your experiences with the Ellie community on this blog www.njoybooks.com/sunnydays.

What to Wear What to Wear

Something extra fancy (Fancy Nancy-ish).

Style your hair crazy.  Crazy for you might be defined differently than crazy for someone else.

Wear one of Ellie’s favorite colors today—Pink, Red, Orange, Yellow, Green, and Purple and remember blue will never do.

A funny, surprising hat

Movie/Television Fun

Ellie was a dedicated movie fan, to a few classics.  She would downright refuse to watch anything new because she felt like she had already witnessed the BEST; anything else would be a waste of her time.  Choose one of Ellie’s favorite movies to watch:

Grease.  Sing along with Danny’s sad song (aka Hopelessly Devoted to You).  For the rest of the day whenever anything bothers you, sing what is bothering you to the tune of this song (just as Ellie did when she was four or five).

Mary Poppins.  Look for the magic all around you today.

Singing in the Rain, Ellie would never have wanted to do this but the movie is great.

I have confidence is a song Maria sings as she departs the Abbey in The Sound of Music. When someone gives you a compliment today, respond with, “I know.”  Just as Ellie used to.  She knew that her dress was fantastic and would agree enthusiastically with the person giving her a compliment.

Music Man (older or newer version) and sing along.  Particularly the older version was the one I would put on in the hospital when Ellie was feeling tired because it is long (maybe 3 hours?).  If she fell asleep, I would just keep the movie going, she would wake back up, look up, see the movie on and continue watching, as if to say, "Oh yeah, that is what I was doing, watching Music Man."  The original was her favorite.

Have a day dedicated to Sesame Street.  Watch an episode of Sesame Street.  Wear some Sesame Street attire or read a Sesame Street book.  A special Sesame Street video Zoe’s Dance Moves was given to Ellie on her Make-A-Wish trip.

Sid the Science Kid, Ellie liked this show mostly for the crazy hair.

Ellie’s one and only movie theatre movie was Chicken Run.

Eating Suggestions

Ellie had her favorite foods, didn’t she?  During one phase she refused to eat anything but restaurant food.  Something Esther deemed “smart.”
Chocolate chip pancakes and/or chocolate chip cookies, the bigger the better.
Chips with ridges (the liney kind)
Visit your local Indian Food buffet.  Tandoori chicken and naan were her favs.
Eat a meatsa pizza (pizza with lots of meat on it).
Thai Fried Rice
Chicken Swarma from a Mediterranean place.

Sausage links not patties.

Activities

Have a moment of silence.  Then stop yourself and proclaim how much you HATE not being able to talk.  Instead tit tat (talk chit chat) with whomever is around.  Maybe make a “date” with someone to have coffee and talk.

Make a batch of chocolate chip cookies and deliver them to your local children’s hospital or Ronald McDonald House.

Have fun with sand today.

Sing to yourself today.

Make a wish today and absolutely know you can make it come true.

Refuse to wear mittens.

Make a stranger a friend today.  Know that everyone you meet is a friend waiting to happen.

Go to the library today and check out an inordinate amount of books.  When you get home snuggle down in bed to read them.  One of the many things Ellie was good at was snuggling down in bed for a good story.

Play Office with someone.  That means you each get to work on a project of your choice, but you are in the same room.

Look at someone with loving eyes.  Eyes so filled with love as if you know who that person REALLY is.

Smile or talk to someone differently abled.  Or at the very least give him/her eye contact letting him/her know that you see.

Buy a happy face balloon.  Find something excellent to do with said balloon.  (You could take it to a kid in the hospital or even use it decorate your own home.)

When someone says, “Have a nice day,” respond with, “It is too late.”  Pause, pause, pause. “I already am.”   OR when someone asks how you are today, respond with “Jilled.” (joy filled)

Visit the giraffe at the zoo.

Make some crayon art.

Give away a teddy bear (for example, we are going to give a teddy bear to our local Hospice Care, as they collect them for families in their care).

Play with your fingers or toes today.   Remember this is a toy you always have with you.

When someone says, “Thank You” respond with “You’re welcome.”,  even if they are on television.

Take a walk and look for yellars (yellow cars).

Wear no socks (around your house) regardless of the temperature outside.

Begin (or continue) a gratitude journal.  This was one of Ellie’s favorite dinner activities.

Create a photo album or wall of love today.

Use or make-up Ellie words today.  Attempt to make up a 13 syllable word.

Review Ellie’s huggle snuggles  (at www.njoybooks.com/huggle) and attempt to give each kind today.

Know that you are interesting enough to be your own channel.  Pretend as though you are a series of television shows throughout the day.

Challenge for the week:  have short term memory loss.  When something bothers, irritates, angers, or frustrates you, feel the feeling and then forget about it.  Totally forget about it.  Especially good for those you live with!

Draw a warm bath.  As you lower yourself into it, exclaim, “AAHHH”.

Notice all the beautiful colors around you today.  For extra points, you can exclaim, as Ellie would, “Pink!” or “Yellow!” when you notice them.  (We even made a joke of yell “oh”)

Buy yourself a rose or a dozen in one of Elisabeth ROSE’s favorite colors—pink, red, orange, yellow, green, and purple.

Ellie's playlist:
http://grooveshark.com/playlist/Ellie+s+Songs/41740341

An Ellie slide show
https://picasaweb.google.com/112105172834592593519/StarredPhotos?authuser=0&authkey=Gv1sRgCM37jf6dv_zBCA&feat=directlink

Donus!

[caption id="attachment_4425" align="alignleft" width="225" caption="Ben in a limo!!! He has made it!"][/caption]

One summer during one of Ellie's hospital stay, almost every time Ben and I would drive home we would see a limousine.  Ben was fascinated and it became our habit to search for the limo on the ride home.  Sometimes they were longer, sometimes shorter, sometimes white, other times black.  Sometimes we would even spot a Hummer stretch limos (what I think of as "manly" limos").  Ben decided he wanted to ride in a limo.  My response was similar to many of my responses to Ben's funderful ideas, "Yes!  What a fabulous idea we should do that some time."  A way to encourage without the commitment.

In December we received our newsletter from Ronald McDonald house.  On the back of the newsletter was an ad for a limo ride around Madison to see all the holiday lights, $10 per person, net proceeds to go to Ronald McDonald house.  Donus (double bonus.  Ellie and I always joked we had to be careful because this sounds like "donuts" and Daddy loves him some donuts!)  Ben's wish was going to come true AND we could help contribute to Ronald McDonald House!  So the Tuesday after Christmas, we all went on our limo ride (in a manly Hummer limo) and saw the lights around Madison (took about an hour--I love that Madison is both big enough to take an hour and small enough that it only takes an hour!)

Sleepy and Pee-pee

[caption id="attachment_4418" align="alignleft" width="300" caption="Lotta smiling while I am awake."][/caption]

It was 11 pm and Lotta was still going strong.  She had had a moment of seeming sleepiness but then somehow had re-awoken, more awake than ever.  I call that teasing me.  With Ben on winter break, all of our schedules are a bit out of whack.  I took her into the bedroom, turned off all lights except for the little lights above the bed.  Then I lay down.  Quickly my eyes began to close as Lotta took her jewelry box and continued to play with her necklaces and bracelets (you would be surprised how loud this activity is when you are trying to sleep).  At one point, she slid herself out of bed and out the bedroom door.  When she found the house dark, she quickly brought herself back into the bedroom.  A previous evening, she had gotten out of bed and found Ben asleep in his room, she woke him up "asking" him about some of his stuffed animals.  But last night all was quiet and dark, no Ben to entertain her.  Back in bed, every few minutes she would put her little face right up against mine and smile a BIG smile to awaken me.  Hard to stay grumpy at that much cute that close up.

While I find our old home charming, Ben finds our old home spoooky.  Yesterday, Ben decided he wants to start a blog.  We were discussing what makes a "good" blog (I do realize this is a matter of taste).  We were eating dinner at the time and Ben was really really squirmy, you know the kind of squirmy where you are trying to hold the pee pee inside and it is wiggling to get out.  I requested, firmly, that Ben go potty before there was an accident.  He told me he was afraid to go by himself.   "Hey, this would be something to overcome and then you could blog about it!" I enthusiastically suggested.  Off he raced to the bathroom.  Immediately following dinner he wrote his blog.  Surprisingly, not about using the bathroom but instead about our trip to a coffee shop earlier.

Entertainment at the Mall

[caption id="attachment_4412" align="alignright" width="225" caption="Ben and Lotta at the mall play area."][/caption]

Last week boredom and coldness set in during Ben's school winter break.  We decided to go play at the mall.  (Ben wonders why is it called a mall?)  There we discovered Lotta is a fancy girl.  I was searching for a winter coat for Lotta, knowing that eventually winter will arrive in Wisconsin.  I went into a children's clothing store to quickly take a peek at the sale coats.  I looked over and there was Lotta standing by the jewelry display, bracelets completely covering her arms.  She was quite quite heartbroken to leave the bling in the store.  She could not understand how something so horrible could happen to her.

Also while we were at the mall, we ate a pretzel.  Love those mall pretzels.  As we were eating, I spotted a row of brightly colored candy dispensers.  I told Ben how there was a point when we were feeding Ellie a special no-sugar diet in hopes of shrinking her brain tumor (look how well that worked out).  After her tumor had grown, instead of shrunk, after

Eating pretzels at the mall.

months of dissuading Ellie from eating things like beautiful cakes with frinkles (how she pronounced sprinkles), my sister suggested we chuck it all and go to McDonald's.  But, I digress, one day Ellie and I were playing at the mall and we came upon the brightly colored candy dispensers.   For each candy dispenser, Ellie and I would pretend to put our money in, turn the handle and eat our delicious candy.  In one of the dispensers there was an actual not-pretend but real candy, my heart skipped a beat as Ellie popped that piece right into her mouth.  I am a stickler for rules, so even that one small piece made it seem as if everything were ruined.

I realize this is not the most entertaining story.  Ben loves stories, so when I shared this one with him, he laughed and loved that Ellie just popped that sucker in before I could stop her.  Inspired me to keep blogging, even if just to keep these stories documented, if nothing else, for his enjoyment.

 

Santa Magic

[caption id="attachment_4406" align="alignleft" width="300" caption="Ben with his favorite present--a dragon lego set!"][/caption]

We went out to brunch yesterday at one of our favorite restaurants, Manna Cafe.  As Lotta and I were retrieving water, she suddenly said, "Hoo hoo hoo" her baby sign for Santa.  I looked up to see what she was referring to and there was a large-ish man, with a long white beard.  Then this Santa-like man just happened to sit behind us, so Lotta continually to turned around, pointing and repeating his name.  Fortunately, the man was a good sport and said, "Hey what's Santa doing here?  I thought Christmas was last week?"

Ben is still super excited about Santa.  He wants

[caption id="attachment_4407" align="alignright" width="300" caption="Lotta with Kermit and Elmo on Christmas morning."][/caption]

to continue to believe in amongst all the skepticism of his classmates.  He has explained several times that how would it be possible for parents to buy that many presents or stay up that late?  He is hanging on by a thread.  Sort of like his front tooth, which continually moves around every single time he talks, it is so loose.  He does not want to yank the sucker out, even though it seems quite apparent that its time has come.  He is desperately hanging on to both his  Santa belief and that baby tooth.  We'll see which one lasts longer.

 

Ellie is Happy

 

What? 2012 already??

"We must see all scars as beauty...Because take it from me, a scar does not form on the dying.  A scar means, I survived.

In a few breaths' time I will speak some sad words to you.  But you must hear them the same way we have agreed to see scars now.  Sad words are just another beauty.  A sad story means, this storyteller is alive.  The next thing you know, something fine will happen to her, something marvelous, and then she will turn around and smile. (Little Bee by Chris Cleve, Simon and Schuster, 2008, page 9)."

As we approached 2012 this year, I admit I was filled with dread, thinking of how once we enter 2012, we will be living in a year when Ellie did not.  Which is ridiculous because, honestly, Ellie only lived for 13 days into 2011.  Even though I'd rather not feel this sense of wistfulness and dread, I do.  Still.  It feels like the scar the above quote is talking about.

More recently, it has been harder to write.  I feel this wordless hole in the middle of me and the writing just doesn't come.  It feels wange (weirdly strange) to not have this outlet that has served me throughout this year.  And yet, it also feels as if, like Bill Murray said in that camp movie, "It just doesn't matter".

Before my mom came to visit, she told me she was drawn into a store at the South African airport. A store she had never before browsed in, but for some reason this time she felt compelled.   As she was walking around, suddenly she looked up and spotted a shirt that said, "Ellie is happy." That is me turning around to smile (or maybe Ellie).