My not-so-good friend, Despair

[caption id="attachment_3656" align="alignleft" width="300" caption="Baby Ellie."][/caption]

I miss the sound of your voice.  The loudest thing in my head.  And I ache to remember all the .. sweet perfect words that you said. Come on get higher by Matt Nathanson. 

Its like a craving that cannot be filled.  An itch that cannot be scratched.  This missing of Ellie being here with us.  A dull ache.  I have dreams that we have lost her.  Is it normal as a parent to feel like you should be looking for your child when she is not there?  A sort of reverse imprinting.  I recall reading that Mary Todd Lincoln was known as "crazy".  Three of her 4 children died, not to even mention her husband being shot in front of her.  Now I think, of course, she was crazy.  How could she not be?  I cannot imagine that kind of grieving and all in the public eye.   

Someone told me once that whenever a time on the clock  is the same number, you get a wish (for example 5:55 or 3:33).  The other night, I looked up to see 11:11 displayed on my digital.  The most powerful of all, in my rule

[caption id="attachment_3660" align="alignright" width="300" caption="Baby Ben"][/caption]

book, because all 4 numbers are the same.   I scrambled to think of a wish before the time changed.  I realized all of my wishes more recently have been for Ellie.  For Ellie to feel better.  For Ellie to be able to have the strength to do what she loved to do.  "(Not so much because I am a selfless person (far from it) but because these were the most pressing issues in my day.)  I suppose, in a strange way, all of those wishes have come true.  Now I am left with my wish bucket empty.  I suppose I also have to re-learn how to wish (not to worry I am pretty good at coming up with wishes, ask Thom). 

In the book I am reading (Earthly Pleasuresby Karen Neches) the guardian angels have to yell to be heard.  This is because the humans cannot hear their angels with all the despairing voices talking in their heads. Reminds me of the times I feel Ellie, when I am still and quiet and filled with love.  Never in my moments of deepest despair. 

[caption id="attachment_3657" align="alignleft" width="300" caption="Jilled Lotta."][/caption]

During one of Ellie's last hospital stays, I was at home, in bed with Lotta and Ben.  I was having a super ugly cry, trying to keep silent and not wake the sleeping children snuggled against me.  At the same time. get it out, so I don't have to walk around with that heaviness.  Suddenly Ben rolled over and put his arm on my shoulder.  I knew in that moment that not only would I assist them in surviving this, but  Ben and Lotta would uphold me throughout this journey of grief.  There will be and have been times where I will be as crazy as Mary Todd.  I know not only will Lotta and Ben motivate me to come back to joy, but they will call me there with there own jilled spirits.  Because just like Ellie. being jilled is their natural state.

And then there's Valentine's Day

[caption id="attachment_3642" align="alignright" width="300" caption="Snuggling with some of my delicious valentines."][/caption]

Unlike my birthday, I love Valentine's Day!  For the past few years we have used it as an opportunity to express what we love about one another.  Ben and I create Valentine's Day cards then we each take turns sharing what we appreciate about each person and record it on the card.  I have also used this day as an opportunity to choose a song that either expresses how the family member makes me feel or reminds me of them or says something I would like to say.  Plus we went out to dinner for a heart shaped pizza that looked round AND we get roses to decorate AND what a great excuse to eat good chocolate.  As an extra surprise bonus, Thom gave me gorgeous garnet earrings (ellie's birth stone).  So many pluses to this love-filled holiday.  Here is what I wrote to each person this year.  I did it in rhyming poem, although I must admit I was a bit intimidated by the poems written by Ellie's classmates.  (I see a television show here--Can you rhyme as well as a 5th grader?)

Lotta, Lotta how you shine,

Won't you be my Valentine?

Full of possibility, love and joy.

Can you believe we thought you might be a boy?

You are especially laid back and easy

Like a gorgeous spring day, beautiful and breezy.

Even when you like to roar (sounding like a dinosaur)

Still, even then, you make our hearts soar.

You arrived at just the perfect time.

So glappy (glad happy) you are here to share our valentine!

Lotta's song:  Your Song the Moulin Rouge version

Ben, Ben how you shine,

Won't you be my Valentine?

I love your incredible ability to create fun

even when there is no sun.

I love how YOU love your sister Lotta

with all that love you could fill a potta.

I love to family zumba and watch you shake shake shake

or in the kitchen where you bake bake bake.

In all the world there could be no better son.

To me you are number one!

Ben's song:  Firework by Katy Perry

[caption id="attachment_3648" align="alignleft" width="300" caption="ellie as a duck."][/caption]

ellie ellie how you shine

won't you be my valentine?

so much do i miss

being able to give you a kiss

or an extra special created hug

watching you make big messes on the rug

crayon papers are still everywhere

as you float around us in the air

although i knew it was time for you to go

being with you was my favorite show*

*with the exception of the ben and lotta shows of course!

Ellie's song:  Three Little Birds by Bob Marley 

Thom, Thom how you shine

won't you be my Valentine?

I love how you are gentle and kind

makes me want to rewind

to a time when we were all together

fairing every kind of weather,

But with you I knew we would survive

working together like bees in a hive.

Thank you for the family we made

for your love I would never choose to trade.

Thom's song:  Oh Africa! by Akon (line:  this is our time to shine)

Let's Call the Whole Thing Off

[caption id="attachment_3601" align="alignright" width="300" caption="Celebrating Ellie on her 2nd birthday."][/caption]

How do I possibly have a birthday this year?  Ugh.  How do I turn a year older when she does not??  It makes no sense to me, I want to call it off.  Do you think we could all collectively decide to not even have that day?  I don't know how to celebrate MY birth when Ellie will not be here.  And usually I am all about birthday celebrations and taking advantage of the opportunity to sleep in and have someone else wait on me (Thom's not as excited about this aspect of my birthday.)  I imagine parades, sunny skies, singing and dancing.  But I really truly wanna call it off this year.  The sifferant (same different) when Ellie was about to turn 4 or 5 and she refused to become the next age.  It took her 6 months to agree to  being the next age.  Ellie was just having too much fun at her current (or previous) age.  She could not imagine it getting any better than the age she already was.  Will everyone respect that I am refusing to turn 41 for a different reason?  Or will everyone think that I have finally matured (nothing could be further from the truth)? And if that happens will this dull dread go away?  I know I will figure out how to do it.  Ben will certainly help, with his complete exuberance towards all things birthday related (particularly cake).  But right now it just makes me feel exhausted.

Perhaps I should have groceries delivered...

I do not know what it is about Fridays.  I mean most people talk about Mondays being hard.  For some reason Fridays are getting to me.  Last Friday, I felt myself in a downward spiral.  I quickly texted my fabulous friend, Karly.  Some friends you need to schedule plans months in advance.  Karly is a spur-of-the-moment friend.  More than once I texted from the hospital and Karly would drop everything and come for a visit.  Last Friday we met up at St. Vinny's for a bit of thrifting retail therapy.   I arrived a bit of an emotional mess.  St. Vinny's just happened to have a fully set table display in the front window.  We sat down at the table and I suddenly felt as if I were in a play.  Playing the role of the grieving mother.  Then it all seemed so ridiculous we had to laugh. 

This morning I ventured to the oh-so-jolly store known as Trader Joe's.  I was in the produce section when it hit me full force like a monsoon. How do I get out of the habit of shopping for Ellie?  A friendly Trader Joe's employee came over to see if he could assist me.  I was going to joke that I always cry at the end of honeycrisp (those glorious apples) season but was too veklempt to deliver my line (dagnabbit!)  Another shopper came over.  When I explained that my daughter had passed a few weeks ago, she put her arm around me and cried too.  Once I got it out, I was able to complete my shopping (and boy did I ever shop--$167 worth!!)  When I met up with the other shopper at check-out, she congratulated me on my accomplishment.

I feel like I am walking through heavy fog most of the time.  It is disorienting and makes it hard to see.  In a previus blog I talked about how the hospital is like its own country--with its own language, food, and even time zone.  That is sort of how I feel right now.  As if I am in another country all together.  Everything seems the same and yet strangely different.  When someone asks how I am, someone who actually wants to know, I have no words to explain.  It seems such a simple question.  I feel the need to concoct a new vocabulary to depict this space of being.  I am surviving, I have not jumped off a cliff, I did get out of bed this morning.  And something is missing.  I am missing something essential.

The Solution Seeker

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So Ben has been having some bed wetting as of late.  Not that unusual for a 5-year-old.  I asked him what he thought we could do about the pee pee getting on the bed.  He suggested we have him sleep on the floor. 

I paused then said, "No I mean how do you think we could get the pee pee in the toilet?"  He then supposed he could sleep on the toilet, but he wasn't sure how comfortable THAT would be.

Honoring Ellie

[caption id="attachment_3589" align="alignright" width="300" caption="Ellie expressing her displeasure with picture taking. "][/caption]

Here is my story.  I am not trying to convince anyone to give up their story, simply sharing.  Some people have told me how they feel that its not fair that Ellie passed.  Or they do not understand why.  Or that it is not natural for a 10-year-old to die.  And I am amazed that this is collective our belief system.  Probably not 100 years ago, it was common place for 10-year-olds or younger to pass.  Even in many countries today children dying is a common occurrance.  For us, here and now, we are treated as an anomaly, practically reaching celebrity status because of this rare occurrence (and how fantastic that it IS such a rareity).  Not that I am complaining, I do enjoy feeling like a celebrity without the paparazzi.  The love and support that has been pouring in here has been phenomenal.   

We have always felt that there was a bigger picture story going on with Ellie.  As if she were an angel disguised as a little girl.  That she was not "ours" --her purpose was always larger.  Her medical stuff was just an avenue to fulfill her purpose.  We were just fortunate to be picked to play the role of her parents.  From the start she seemed way wiser than me.  I honestly believe that Ellie was finished with what she came here to do.  She had jed (joy spread) and enriched all of our lives, forcing us all to grow.  It seemed natural to us as her physical body began to continually let her down that she would drop that body and go play with her angel friends. 

Do I miss her?  Heck ya.  So much so that at times I feel as if I will split apart.  Makes me feel old and achey and slow.  I want to wail and sometimes do.  Not a day or moment goes by that it does not feel as if she is in the back of my mind.  Constantly.  I miss the sound of her voice.  Her feigning interest in all my thrift store finds.  Her incessant chatter.  Her jokes.  Her continual search for color.  Her beautimile (beautiful smile).

[caption id="attachment_3590" align="alignleft" width="300" caption="And back to jilled."][/caption]

I feel closest, most connected to her now when I am in a space of love and appreciation.  Because I believe that she is now complete love and appreciation.  When I do dip into despair, it is with the knowledge that I will feel disconnected to her in those moments most of all.  I know with every ounce of my being that staying stuck in despair would be the greatest disservice to Ellie of all.  She who could declare how happy and jilled she was the day after major brain surgery.  On the other hand, when she was angry, frustrated, sad, she was never afraid to authentically express these emotions fully so that she could quickly and easily go back to being happy and jilled.  She never faked it.  It wouldn't have even occurred to her.  That is what I too intend to do.  This, to me, feels like the best way to honor everything that Ellie taught me.

More Magic

[caption id="attachment_3572" align="alignright" width="300" caption="BEN THE GIANT"][/caption]

Thursday I went to Michael's to look into getting a few photos framed for Ben.  Photos he has chosen of Ellie.  Well I had forgotten how loooong it takes to get something framed at Michael's and realized I was running late to pick  Ben up from the bus stop.  As I raced to get to the bus stop, I was in the left hand turn lane when the car in the front and right side of me started to pull into my lane.  I immediately thought "We are going to crash!!!" and started to scream like my mom.  From my vantage point there was no where for my car to go, as the snow was piled high on the other side of the car.  Somehow, magically, we did not crash.  And I again I got a cardiovascular workout without stepping foot in the Y. 

Later, I did step foot in the Y to attend  my favorite Zumba/Hip Hop Fit class.  Lotta had not been feeling well, so I was reluctant to go and leave her without her food source for very long.  We were on the last song before cool down, when I suddenly had the urge to leave.  I thought, logically, I could stay for 5 more minutes, but the urge was just too strong.  Ari, my magnificent instructor and friend, wanted to give me a check for the children's hospital.  I told her that I would get the check from her after class on Sunday.  Right as I walked out the front door of the Y, I ran into Anne, Ellie's night nurse in the PICU.  I never knew she even belonged to the Y as I had never ever run into her before.  We stood outside the Y in the freezing cold and talked about Ellie for about 10 minutes.  Piming is what we call that--perfect timing. 

I asked Ben recently  if he might want to go sell coupons at the Boston Store to help Make-A-Wish.  We talked about how Ellie had a wish granted to go to Sesame Street.  Ben immediately said, "Ellie had another wish granted.  She got to go fly with the fairies (angels)."

Class Poems

First of all, we did not have the reception at the hospital yesterday--rescheduled due to not one but two major snowstorms back-to-back.  We have rescheduled for February 16 (Happy Birthday Betsy!).  So if you still wanted to send money for a fish at the children's hospital, it is not too late!  We will get the money we have collected thus far to the hospital on Monday.  Already we have collected over $3245 in total!!!!  That is a big fish ($2500) and a small one ($500), if you are keeping track.  Thank you ALL for your generosity towards this project.  We feel the love. 

I wanted to share three of the poems written by Ellie's classmates.  They are sazing (so amazing). 

Ellie by Elsa

Ellie touched my heart like a beautiful painting.

Ellie worked so hard like a caterpillar pushing out of a cocoon.

Ellie smiled all the time like when you hear yes you can have another scoop of ice cream.

Ellie made up better words than some of the best authors in the whole world.

Ellie wore the brightest most beautiful colors like a butterfly who is every color of the rainbow.

When Ellie laughed it sounded like the most beautiful orchestras in the world was coming together just to play for Ellie's laugh.

Everything Ellie did was all the beautiful things in the world coming together.

Ellie by Tessa

Death is like a big tall gate.

It has no heart, it is filled with hate. 

Death took you away,

He said he must,

But I think what he did was very unjust.

Sometimes I think with us you should've stayed,

But I know inside you soul must be layed.

Your mind was as beautiful as a newly found jewel,

But to think you would stay, I was such a fool.

Oh, how I wish you were here, But I knew the end of your life was near.

Though the sun and moon will still shine light,

Without you here it will not be as bright.

By Za

You fall into a never wake sleep

All your power ends.

When death arrives you never see the light ever again.

He grabs you and then just lets you go. 

You drift up and beyond the clouds.

You see your mother wave good bye.

And tears that fall from her eye.

You see your father join your mother and fall down to his knees.

He pleads and pleads to let you stay but you are already too high.

You see the stars you see the moon.

And soon you're never more.