Calling

On Oprah's last day, she talked about everyone having a "calling" and our purpose for being here is to find and accomplish that calling.  The next day on The View (can you tell how much nursing/day-time television watching I was doing?), Barbara Walters proclaimed that she did not believe in a "calling".  She was a single mom and she just did what she had to do.

It got me to thinking, as you have probably noticed I often do.  My mom and I discussed the possibility that maybe a calling doesn't have to be a CALLING with angelic trumpets sounding and rainbows and unicorns.  Maybe, just maybe a calling could be tiny things.  One day before we even knew Ellie was near the end, I absolutely understood that the most important thing for me to do that day was just to be in the room with Ellie.  Not even talking all the time.  Just being with her right then.  My calling.  It feels more do-able to me to think of it in that respect.  Not what is my life-long calling, but, instead, what is my calling TODAY?

Dawn of a New Day

So Ben has been outta school for about a week and a half now.  It has been challenging adjusting to having his "Ben-ness" around the house all the time, where before his "Ben-ness" would go to school for a large portion of the day.  Anyway.  I have found myself, while in the midst of my own slow moving, murky grief, quite shocked at the LOUDNESS of it all.  And, I must admit, that I have been quite grumpy and frustrated and impatient with the little guy.

Then yesterday he came home from his morning enrichment classes and he completely and thoroughly lost it.  After school melt down is what I typically define this as.  But this time it was more than that.  So much more.  I knew that everything but everything needed to be set aside to handle this sudden tornado of emotions.  It was like a very LOUD Zen alarm clock.  STOP NOW AND PAY ATTENTION.  He tries so hard.  And he is so adept at reading my emotions.  I cannot fake it with him.  He was suddenly an angry, screaming, throwing, fighting machine.  I stopped.  I listened.  I heard how he also has so many mixed-up crazy feelings right now.  I mean first Thom and I are wistfully missing Ellie.  Then we spend most of our time taking care of Lotta, because she is a baby and she needs us to.  Where does that leave Ben?  As the day was rolling to its conclusion yesterday, we sat talking at the dining room table.  He told me that he had heard of one marine reptile that lived during the dinosaur times.  When the mother reptile had a new baby, she forced her older child to leave.  Wow!  I thought that is exactly how he is feeling, like the reptile that is pushed out.

So today I am determined to notice all those wonderful things I love about Ben.  His exuberance.  His creativity.  His love of Lotta.  His intelligence.  His joi de vivre.  His story telling.  His incredible stores of knowledge, particularly about predators.  His new found love of dragons.  Because I know when I am in this space of noticing all those wonderful Ben parts, not only do I feel so much better, Ben suddenly is so cooperative and willing.  He wants desperately to be helpful.

So here's to a new day.  And starting over once again.

Father and Daughter

[caption id="attachment_3967" align="alignright" width="300" caption="Thom and Lotta"][/caption]

Maybe a month after Ellie's death, we received this gorgeous card from one of the PICU nurses, Anne.  I did not have the pleasure to know Anne as well as Thom did, as Thom was on the "night shift" with Anne while I was on the day shift.  I saved this card to share with you all until now because what she says about Thom is so very perfect this father's day.

The front of the card said, "Let no one ever come to you without leaving better."  Mother Teresa

Inside the card said, "To Ellie who always knew how to make me smile! and who, in her own way, made the world around her better!"

[caption id="attachment_3968" align="alignright" width="225" caption="Thom and Ben. "][/caption]

My very first memory was during one of her hospitalizations about a year ago.  Ellie was in a sleep deprivation marathon!  24...40...with little sleep.  Each morning I would give report and say, "I'm sure Ellie will sleep all day, she's been up all night."  I was an Ellie novice!  Night after night the circles under Ellie's eyes grew dark, she however, endured.  Resting only briefly before picking up exactly where she left off talking or peeling crayons.  Now I like to think I know a thing or two about sleep deprivation (working 12 hour night shift) but Ellie blew me away!

I always remembered Ellie after that first stretch of nights I worked with her.  During those sleepless nights Ellie gave me some awesome book recommendations.  To this day I cannot see a "Charlie and Lola" book without thinking of Ellie.  I clearly recall distracting her during a neurosurgery procedure just by asking for book ideas for my girls. She happily rattled off a complete list including title and author.  Thanks to Ellie I'm happy to share her love of books with my own children.

[caption id="attachment_3969" align="alignright" width="300" caption="Thom and Ellie."][/caption]

When I think of nights in the PICU taking care of Ellie I am also reminded of the lessons she has taught me as a PICU RN.  I am reminded of the mysterious and intricate way her body worked.  One night I remember seeing the highest sodium level I had seen on any patient only to have it reverse to dangerous lows days later.  Ellie always demanded the very best of those taking care of her.  She baffled the best and brightest and challenged all rules of physiology.  One could not take care of Ellie without having great respect for the delicate balance within her body.  She reminded us to pull back look at the big picture and really, really pay attention.  On many occasions I would enter the room with worry only to be greeted with a smile or a new Ellie word.  She was remarkable.

[caption id="attachment_3970" align="alignright" width="300" caption="Ben and Thom explore the seashore."][/caption]

I also learned many lessons on parenting from watching your family.  As a PICU nurse, I go to work and see others face my biggest fear.  "What would I do if my child was in the PICU?"  I have entertained that thought many times.  The answer I have learned from you.  Love them.

I think back to those long, long nights where I watched you, Thom, love Ellie at all hours of the night Ellie would call, "Dad, Dad..." and with patience that would rival Ghandi you would awaken from your tiny morsel of sleep. "Hey Kiddo..." you would say never with the slightest hint of exhaustion or annoyance.  It was the most amazing, unselfish, unconditional love.  I will never forget it.  Ellie's wonderful spirit was most certainly a direct reflection of the love she received from all of you.

[caption id="attachment_3973" align="alignright" width="300" caption="Ellie and Thom snuggle in bed. I am guessing books were involved in this scenario."][/caption]

Last Tuesday, I was reminded of my most favorite Ellie-ism of all.  I was leaving the gym, it was a cold, dark morning...one of those days where its hard to find anything good about it.  The man at the desk called out, "Have a good day."  I entered the bitter wind, I smiled and remembered Ellie.  Next time I decided I would stop and reply, "It already is."  I know she would proudly reassure me, "you can borrow it."

Thank you Ellie,

Thank you Kennedy family,

Ann, PICU RN and one of Ellie's biggest fans

I recently heard a song on the radio by Paul Simon called, Father and Daughter.  It was such an utterly perfect dedication for Thom for this father's day.  I almost crashed the car I was crying so hard.  And they say texting is dangerous.  Geesh.  I will see if there is a way for my technical support (aka Thom) to attach the song.  If not, google it for crying out loud(and most likely you will cry out loud).

Why does the dark seem darker than the light seems lighter?

[caption id="attachment_3944" align="alignleft" width="300" caption="Newborn Lotta."][/caption]

A few weeks ago,we were fortunate enough to have a playdate with Ellie's famazing (fantastic +amazing) friend, Izzy.  As we walked her home from school, I asked her the question I ask my children every day after school, "What was your favorite part of the day?"  It seems to elicit more of a response than "How was your day?"  Ben and Ellie were so used to this question that they immediately responded.  I was a bit surprised when I asked Izzy my standard question and she responded that she did not have a favorite part of the day.  I persisted.  She finally came up with something.  It made me wonder if that was a challenging question.  If perhaps my kids are just primed for it.

Then, once again, one of my favorite Jennifers sent me this in an e-mail...

[caption id="attachment_3945" align="alignright" width="300" caption="Newborn Ben."][/caption]

A week ago today my sister-in-law's sister-in-law lost her baby.  He was born and died on the same day.  I don't know any more than that and I mourn for them in all the possible ways that I can

mourn for people I hardly know.  I'm so removed from this couple that I didn't
even know they were pregnant.  When I was told about the baby dying, I thought,
"Isn't it sad that I'm on the list of people to inform about the death, but I
wasn't on the list to inform about the pregnancy?"

[caption id="attachment_3946" align="alignleft" width="263" caption="Newborn Ellie."][/caption]

Which made me ponder too.  Why does death seem so much more important, so much more newsworthy than a birth?  I mean we all go through both, right?   They are both part of transitioning.

And why now when I enter Ellie's room as I am brushing my teeth (I learned that walking around while brushing your teeth from Kip and Kirk's dad, Roger) do I suddenly remember her last days?  And not all the days that came before?  All the days of her sitting in her room, oh so happy, clapping her hands and feet, peeling crayons, counting books.  Perhaps it is because this memory of her last days seems so big, so raw, so new?  Perhaps it is the drama I am attracted to?  Perhaps it is my brain still processing the unbelievable idea that she is gone?  I suppose right now, I don't have the answers, just the questions.

Baby Love

[caption id="attachment_3960" align="alignleft" width="300" caption="What? An anniversary? Today?"][/caption]

Sixteen years ago today on a hot and humid Saturday in Missouri, Thom and I were married.  I am not big into anniversaries, as I feel every day I choose to be with Thom.  Every day is a gift, this family we have created.  As I have said before, it is my dream come true.  (Plus, again, I am sincerely not really in that whoo-hoo ye haw celebratory mood right now.)

This morning I was appreciating our Lotta Joy and felt inspired to write about her.  After all, she is in a way, a by-product of what happened 16 years ago.

I love the way Lotta pats my back gently when I

[caption id="attachment_3961" align="alignright" width="225" caption="Two of my great loves."][/caption]

pick her up when she is crying.  And that she can just as easily pinch your face and poke your eyes.  I love the way she giggles at Ben's antics.  I love that when her hair is not covered in some food stickiness she has this one little curl in the back.  I love her unbridled enthusiasm for being outdoors.  And her heartbreak when someone, anyone leaves her inside. I love her exuberance towards music and her ability to dance while seated.  I love how at Family Zumba when she hears that loud loud music, her little face lights up and she cannot stop smiling.  I love that she thinks a sippy cup is a horn and blows out when I try to give her a drink.  I love that she growls intermittently like the lion (month of birth: Leo) tiger (year of birth) she is.  I love how she will not keep socks on her feet even when they are chilly which reminds me of Ellie.  I love how she grabs my hand to rub her head when she is trying to fall asleep which reminds me of Ben.  I love how she lays her head on my chest when she is tired or feeling shy.  I love how she seems ever so slightly offended to be on the floor while we are all standing.  I love how she struggles to be both held and free crawling at the same time.  I love how Lotta plays catch with herself by throwing the ball then chasing it.  I love how now that she knows how to splash, she adores the bath.  Which is fortunate because she also adores the dirt.  And leaves.  And tiny rocks (in her mouth).  I love how she so makes me heart sing that I have to call her La La.

chicken (here is how Lotta says "chicken")

Keeping the Crazy Contained

One of my favorite Jennifers (you know we have a collection, right? oh how I adore my jennifers!) recently sent me yet another exceptional e-mail after my blog, "Shocking", here is what she said.

I always marvel that the shouting in my head doesn't fall out my mouth.  Do you?  When someone asks
you how you are and you answer, "Fine," are you sort of surprised that the
shouting didn't fall out.  I am.  I sometimes stand there silent thinking, "Did
I say fine?  That's not what I said in my head."

And, sometimes when the shouting falls out of my mouth, I think, "Did I say that out loud? How did I let that escape?"

As you may or may not know, I call that keeping the crazy contained in this package (my body).

I keep wondering when I will get to the point where everything but everything does not make me feel weary and sad and missing-y.  I am hopeful that will be soon.  Please.

And yet another library "incident"...

Ben "helps" with Lotta.

Remember how we used to have all kinds of disastrous scenes at the library?  Kinds where I felt as if we would no longer be welcomed at that branch.  Or perhaps armed guards would escort us out.

Yesterday we walked to our local branch.  As I was attempting to sign Ben up for the summer reading program, Lotta was getting fidgety.  She thoroughly enjoys pulling all the books off the shelf at the library.  You know, THAT age.  How could I possibly distract her with anything else when she is completely surrounded by books?  Anywho, I was waiting somewhat impatiently for our turn, when a

[caption id="attachment_3926" align="alignleft" width="300" caption="Lotta loves to swing like her siblings before her."][/caption]

woman, who very obviously had several disabilities approached me.  She was pushing a stroller of a baby with perhaps Down Syndrome.

Suddenly everything stopped for me.  Because now I know.  Because of Ellie I know there are these amazing angels hiding out in physical forms that sometimes look broken.  This woman struggled greatly to ask me how old Lotta was.  She then struggled to tell me how old her baby was.  I knew that rushing her would only make her speaking that much more difficult.  It felt as if everything else around us faded away.  You know like that scene in West Side Story when Maria and Tony meet, but perhaps a bit less dramatic and romantic.  After our encounter, I knew that I had indeed been touched by an angel, because I suddenly felt more peaceful, appreciative, less harried and worried.  After we signed Ben up for the summer reading program, we discovered that they had a guessing contest.  Can YOU guess what we guessed?  How many crayons were in a container.  Crayons.  It feels like Ellie is all around us.  All the time.

Feelin funky

As I mentioned, Ellie's graduation was last Thursday.  Ben's Kindergarten graduation was Friday.

At Ellie's graduation, they honored her by having her 4th grade teacher, Ms. Bietlich, play the guitar and conduct a sing-along to "All You Need is Love".  It was perfect.  What I was not expecting was her 5th grade teacher had a certificate of recognition for Ellie.  Her classmates picked 3 words to describe her--jilled, unforgettable, fantabulous.  I was so caught off guard by the whole thing I began to cry and before I knew it, it became a loud sniffly, "ugly" cry (as Oprah would say).  At the end of the graduation, a 16 minute slide show was shown.  Sixteen minutes of her classmates, going on field trips, playing instruments, smiling, performing plays.  I felt overwhelmed watching it thinking Ellie would not be participating in any activities with them ever.  My second thought was, she would have HATED all those activities.  There were no photos of Ellie.  Which in a way just made me miss her more.  I know Ellie hated having her photo taken and she honestly was not in school much this year.  I also know the committee planning the graduation had a hard time figuring out how to include Ellie.  She was not listed as a graduate on the back of program.  It is wange (weird strange) to think of her not going on with her classmates.

I had one of those moments as I prepared to walk to graduation Friday where I was just so completely overcome by love for these children I have bore.  How fortunate am I to have had this opportunity to be the MOM of 3 such fantastically terrific human beings.  I feel honored and humbled.

So Friday when I went to Ben's Kindergarten graduation, I just felt off all day and kinda have every since.  You know those awfully awkward times when you try to tell a joke and nobody gets it so you end up trying to explain that you were trying to tell a joke.  Making you feel like maybe it would be best if you just crawled back into bed with a good book.   Sending apology notes later when you feel more up for facing the world.  It just feels like a lot of endings right now.  I know, I know where one window closes, blah blah blah blah.  Sometimes before the next door opens, you are stuck with that window in your face.  Or maybe it's pie in your face, or in my case, dark chocolate peanut butter cups from Trader Joe's.  Whatever is in my face makes it hard to see.

Congraduations!!

[caption id="attachment_3915" align="alignright" width="300" caption="Ellie with some of her classmates. Smiling at the zoo! Amazing!!"][/caption]

Today is the day Ellie would have graduated from Elementary school into Middle school.  I decided to attend Ellie's graduation as an opportunity to honor and appreciate the classmates and community who have given so much to us.

I did not start Ellie in school as a kindergartner.  At the time I was excited about homeschooling.  And honestly, I was afraid.  For so many reasons.  Ellie was such a pure, loving soul.  She had no understanding of cruelty.  I never explained war or murder to her, because I knew she would have no comprehension of such things.  I was afraid if I sent her to school she would be the one picked on.  And, from home, I would be unable to protect her pure innocence.

After her brain surgery in 2008, things changed drastically for Ellie and I realized I could no longer care for her all on my own.  I needed to send my sweet angel out into the world and let her try her wings.  That first day of 3rd grade, little Ben and I sat outside of the Principal's office, hearing Ellie's screams of fear, begging to go home.  I wondered heartily if we had made a mistake.

Boy were we in for a surprise.  Her classmates not only rose to the occasion but excelled at being Ellie's classmates.  Leaders were born from Ellie's presence.  Compassion and kindness blossomed.  I was informed that the classroom was actually a BETTER place with Ellie in it.  I was shocked and delighted and amazed.  Her classmates were so exceptional that they took her in, making her feel a part of that community.  A super star.  A mascot.  They may not realize how exceptional this was, as this was not always the reaction Ellie engendered from others.  Out in the world at large, she was at times treated with confusion, sometimes ignored.  Being a part of group where she was truly appreciated and loved and accepted for all she had to offer was magnificent.  The thing that was so important to Ellie was not learning to write (which as many know she despised) or learning to read, but the LOVE she felt and gave out.

So as her classmates go forth into middle school, without their beloved Ellie, I know that they will take with them her memory, her words, her smile.   I absolutely know that the kindness, love, appreciation and acceptance they showed Ellie will karmically boomerang right back to them.

In gratitude and appreciation for Ellie's classmates.  Thank you!

Wishing for a hospital stay or even a 911 call...

[caption id="attachment_3911" align="alignright" width="300" caption="Nope, not Lotta, Ellie."][/caption]

Went to the hospital today to drop off 3 boxes of children's books.  When I arrived at the hospital I suddenly had an urge so strong, I wished I was coming to the hospital to visit Ellie.  Sometimes when I hear an ambulance, I have the same thought, how I wish that the ambulance were coming to our home.  I know, it's wange (weird strange) to wish for a medical emergency.  Those things would mean Ellie was alive.

So when I arrived at Guest Depot to drop off my donation, I immediately began to cry.  The woman behind the desk (embarrassingly whose name escapes me) also began to cry.  She knew Ellie.  She knew what I was missing.  Then the woman next door at the snack bar also started crying.  They did not leave me in my grief alone but jumped in with me wholeheartedly.  Even though I can't recall their names (and they mine most likely) we had a MOMENT.

Shocking!

It is astonishing to me how shocking death is.  This week I was searching for a photo of Ben.  I came across one with Ellie's friend Izzy in the hallway with her mom (which now I cannot seem to locate, when I do I will put it in this blog).  I wondered for a moment if it was after Ellie passed, then the next photo there was a very grumpy Ellie pictured.  It took my breath away.  She was ALIVE then, I could hold her, touch her, talk to her, hear her.  We weren't even thinking about her death.  We did not know what lay ahead, so soon.  I yearned for that time once again.  It is shocking to me how shocking it is.  Makes me mad.  Because I never expected Ellie to live to junior high (seriously who of us would choose to stick around for that?)  So why I am so surprised now she is gone?  Is it just my mind absorbing this information slowly?

Occasionally, I will tell a stranger about Ellie and the stranger will look at me with pity.  Which makes me want to shout, "No!!!  You don't get it!  I had the privilege of getting 11 years with an angel!"  Other times as is the custom, someone will ask me how I am doing.  You know, just as a courtesy.  I want to shout, "My daughter is dead!  Nothing makes sense."  Instead, I say, "Fine."

A couple of readers have marveled at my ability to see Ellie's magic everywhere.  How really the magic is there, and we so often miss it.  Frequently I hear a voice in my head shouting, "Show me a sign!!!  Don't leave me here feeling all alone!"  Then I wait for them.  And suddenly, everywhere I look there is Ellie magic.  That's my secret.

Lots of shouting in my head this blog.  Makes me seem a bit wonky.