Wednesday, March 14, 2012

Winning to Lose

[caption id="attachment_4599" align="alignleft" width="225" caption="Kirk holding baby Lotta"][/caption]

Last summer I told my visiting brother, Kirk, about a magazine writing contest I felt inspired to enter.  I mean I felt driven to enter this contest, something that has happened to me neither before or after that particular one.  Although I knew I was not the best writer who would submit, I felt that maybe I would have a different perspective to share on the topic- When I First Knew Love.  The contest was in Real Simple Magazine and the top prize was a trip to New York City.   I started furiously writing.  Then I sort of gave up.  Didn't think I could possibly win, my writing wasn't good enough, too busy, too full of grief, I had loads of excuses.  As the deadline approached, I re-read what I had written.  I thought it wouldn't hurt to submit it, I mean I'd already come that far.  So I began editing.  The day the contest entry was due, I was scrambling to get it in.  I realized I needed a set of fresh eyes.  I contacted my sister, as I always do in an emergency type of situation.  She read it and was quite certain that I would win.  She suggested I send it to Kip, my other brother, because Kip is an excellent writer, he could help me if any restructuring of sentences or new word choices needed to be made.  I also contacted my superb friend Wendy because she used to edit medical textbooks, I thought if anyone would know where to put a semi-colon, she would.   So I had my A-team: my cheerleader (Susan), my creative editor (Kip), and my mechanical editor (Wendy).  I quickly e-mailed/text-ed to ask for their assistance on my submission which was due at midnight (Wendy wondered it that was EST or CST?  See how excellent she is with details?)


And after everyone jumped in to assist with this project, I felt not so alone, so much so that I felt as if I already HAD won.


Well, I did not "win" the competition, as I originally hoped.  The outcome was much different than what I anticipated.  Maybe my urgency about submitting was more about the camaraderie I felt entering the contest or the catharsis I felt writing this piece.  Below is what I submitted.


I thought I knew love when I met my husband, Thom, in college.  My first love.  And (bonus) my best friend.  I wanted to spend all my time with him.  He was the one I would call with any and all important and not so important news of the day.  He was the one I constantly thought about.  He made me feel interesting and shiny and alive.  As if every day was the first day of spring.  As if together, anything was possible.  Suddenly all those sappy love songs made sense.


I thought I knew love when my first child was born, a beautiful, perfect baby girl, Ellie.  The kind of baby that just seemed wise, an old soul.  I had always dreamed of becoming a mother.  This was my dream come true.  I never knew love could be so overwhelming, so big.  So ferociously protective.  The smell of her baby self, I wanted to dive into a pool of its deliciousness.  Everything about her I adored.

I thought I knew love when my sweet baby, at 20 months, was discovered “broken”.  Hidden inside Ellie’s brain was a tumor.  That love was filled with heartache at dashed dreams, an astonishment of what the heart can endure and a knowing that THIS was what we came here to do. 

I thought I knew love as I watched my daughter’s strength and tenacity.  She utterly refused to live in a world of brain tumors or war or suffering of any kind.  As she said to me after a needle poke or a painful medical procedure, “She didn’t mean to hurt me (referring to the doctor or nurse),” and proceeded to make friends.   

I thought I knew love as my daughter the day after surgery would tell anyone and everyone entering her hospital room that she was jilled (joy filled) or happy.  She was such a great teacher.  She became my hero.    

I thought I knew love when my second baby, Ben, was born.  He was filled with enthusiasm, like another angel sent at just the right time to distract me from the chemotherapy which was slowly deteriorating my precious five-year-old girl.  I marveled at how he looked up at the trees as if he could understand what they were saying.  He never seemed to walk; he bounced or ran instead.  Mud puddles were his favorite past time for quite awhile.  I appreciated Ben’s nonchalant acceptance of the hospital as a continual part of our lives.  Even in a sterile hospital he was able to find fun, and play.  Like the day Ben, barely able to walk, pretended to throw up into a plastic container mimicking Ellie or the day when a tiny Ben raced to give Ellie a hug as she re-learned to walk after surgery.  He taught me how to love in an exuberant way, jumping right in. 

I thought I knew love when a year ago, August, we were once again blessed with another angel disguised as a baby.  We named her Lotta Joy.  And she has certainly lived up to her namesake.   The baby-ness of her was like a tidal wave that overtook our family; we were all drowning in love.  She smelled like freshly baked bread and felt as soft as silk.  Lotta tended to do things early.  She always seemed slightly offended when she was not doing the same things as the rest of us.  I watched this ever so easy baby flow into our lives, giving us a distraction from the numerous brain surgeries and hospital stays Ellie was undergoing.   What a strange and wonderful time to have a baby.  As she gained skills, like laughing and smiling, her older sister was losing them.  How bizarre it felt to witness Lotta’s joy AND the sorrow we were all feeling at the slow seeping away of Ellie’s life.  Lotta was never seeing or feeling our worry, she loved the moment she was in.  She reminded me to be present to the gift of each and every moment. 

Then, last January came the day when my beloved husband and I had to decide if we had enough love to let our Ellie go, then ten- years-old.  I was quite positive that I did not know that kind of love.  How could I possibly say good-bye to someone who I loved so enormously?   Who first showed me what it was to be a mother?  It felt as if all other love had been preparation for this, the final exam.  I did not think I had enough love;  I still at times wonder if I do, wishing I could take it all back and have another moment with my Ellie.  It felt as if I never truly knew love before then.  Somehow when the time came, I found enough love to let her go.  It was a somewhat selfish decision, as watching Ellie suffer was not something I could bear.   I had to let her go, to fly and be free with her angel friends.  Because ultimately, all along, I knew she was not meant to last.  I knew she was put here for just a short while.  She never seemed Earth bound.  Instead, it felt as if she were constantly struggling to remain with us.  Every day with her was such a tremendous gift from which my life is ever so much richer.  Yet, her mission was complete; it was time for her to go back from whence she came. 


Now with Ellie gone, buried beneath a big tree in Tennessee, I reflect on all those times I thought I knew love.  How naive I was.  I struggle with how to continue to hold my family together in this crazy disorienting time.  I struggle with how to love who is here without being drained by the sadness of who is not.  It is love, the remembered love of Ellie and the love of Ben, Lotta and of course Thom that sustains me in these times as we reinvent who we are, a family with a daughter who died, and so much more than that.      

Every time I think I know love, life presents me with a fresh opportunity to expand.  My heart bursts wide open and love emerges in a new, sometimes raw, but always fresh way.  Like a prism, continually turning, creating yet another new combination.  Perhaps love is ever changing, ever evolving, making me question the kind of love I thought I always knew.  

Monday, March 12, 2012

Seeing Ellie

[caption id="attachment_4589" align="alignleft" width="300" caption="Ellie and her siblings and her Aunts Sara and Amy"][/caption]

Once I announced that I intended to include Ellie in my life, I received two e-mails I wanted to share.  One is from our favorite PICU Nurse, Katie, whom I was able to have coffee with last week.
I forgot to tell you that I was telling a couple of nurses I was meeting with you. Kelly (I don't know if you remember her, but she cared for Ellie a lot) said to tell you hi. She then said that Ellie was just, magic, that there was such an aura about her. We couldn't quite find the words to describe her as we were reminiscing about her, but agreed she was just magical and we missed that. There has not been a patient since Ellie, nor do I think I will ever care for one again that was quite like her. I miss feeling her magical aura.

Then a few days later, I heard from Ellie's teacher, Sue Zwart (which was marked as having been sent at 4:39 am.  Told Sue it made me feel lazy "sleeping in" until 8am!!)

I've been reading your blog and of course have noticed how your life has taken on a new perspective.  It's a perspective I hoped you could get to in time.  It's always amazing to me how powerful our thoughts can be to our own happiness.  On Thursday a student, who loves fancy like Ellie, came up to the flamingo room from the library.  She had just checked out a book and brought it along with her. It was Purplelicious.  I was so happy to see that book and thought about how many times Ellie and I had read it together. I asked Lila if she wanted me to read it to her and she said, 'Yes."  I opened the book and there was Ellie's picture.  It was like, and I don't mean this in a bad way, that Lila wasn't really there but Ellie was.  When we were at Ellie's celebration in January you let us all pick out a hat that had been Ellie's.  I picked a tall multicolored Dr. Seuss looking hat. Well, it sits  up on top of my giant flamingo in my room.

Finally, I wanted to share a "dream" I had...

The other night as I was falling asleep, I suddenly had a vision of Ellie standing on the stairs.  It was so startling that it felt as if I was falling, the image was so real.  It made me feel so delighted and glappy to see her standing there again.  Then just as suddenly I crashed to ground with longing, yearning, wistfulness for her physically.   What a powerful mix of emotions it was right before sleeping, not too restful I gotta tell you.

Friday, March 9, 2012

Birthday Worthy

[caption id="attachment_4581" align="alignleft" width="225" caption="Lotta discovers snow before it melts into a puddle on my birthday. Dress was from Jenny, definately birthday worthy!"][/caption]

Tuesday was my birthday and I decided to celebrate this year.  As I thought about what I wanted to do this year on my birthday, I realized how many things I get to do on a daily or even weekly basis are "birthday worthy".  How cool is that?  I thought how much fun I have going to Hip-Hop Cardio and Zumba at the Y, how while I'm there not only do I get to dance like a fool, but now I get to connect with an excellent community of friends.  How I am fortunate enough to get to spend my days with Ben and Lotta in a town that I adore.  How I got to have lunch with one of my lovely Jennifers last week to celebrate both of our birthdays AND I get to have lunch with another lovely Jennifer today (as well as Dig-n-Save!)  How Betsy C and I got to have an adventure last Sunday.  How Wednesday I got to meet one of our favorite nurse's baby's, a baby that she found out about right after Ellie passed away.  How I have dozens of beautiful multi-colored roses decorating my house right now.  How I was able to have conversations with all four of my siblings around my birthday.  How the weather is feeling like spring (even in Madison!!)  How I get to spend so much of my time doing things that I adore with people that I adore.  How without both of my amazing parents, none of this life would be possible.  How everything just seems to be getting better and better and better.  My life is so fantastically fabulous and my birthday was an opportunity to appreciate that.  How dramatically things have changed in just one revolution around the earth.

Thom made me a delumptious meal on my big day, with homemade pita bread and homemade falafel and a Mediterranean couscous dish.  PLUS a Hy-Vee cake with my name on it!  When you have an 18-month-old and a 6-year-old, meals can be a bit crazy.  Lots of food flying, yelling, standing in chairs, and messes.  Much messiness (Lotta thinks if she is finished with a utensil or food item, it should be hurled to the floor, we're working on that).  Suddenly, I had this great desire to have Ellie physically there too.  As Thom said, she would have added her own flavor of craziness to the mix.  That she would have.  That she would have.

Saturday, March 3, 2012

Ow and Aw

[caption id="attachment_4574" align="alignleft" width="300" caption="Lotta as a bear."][/caption]

On our walks recently, Lotta and I have listened to the birds.  Many times we hear crows, yelling "CAW CAW".  (Did you know that a crows brain/body mass is actually greater than a humans?  Apparently they are quite intelligent, but I digress.)  Now when I ask Lotta what sound a bird makes, she says "AAWW AWWW"!

When I explained to Lotta the sound a cat makes, "meow",  for some reason, she only heard the "ow" in it.  Now when she crawls around the house pretending to be a cat, she says, "OW OW OW OW".   We have quite the little zoo around here!

 

Thursday, March 1, 2012

Lost

On our trip to Chicago during the 13 days of Ellie.

Things changed dramatically for me after the 13 days of Ellie.  I have discovered that including Ellie means that I feel better.  It was the excluding her that felt so bad, pretending she never happened that felt off.  Finally, I feel able to focus on her presence, figuring out how to continue our relationship now that she is no longer in her physical costume.  I feel that time has been my friend, the wound does not feel as jagged and raw.  I could not have arrived at this point without having been on the journey.  A disorienting journey I had to take, getting adjusted to her physical absence.  I now feel as if our relationship is bigger than a mother/daughter relationship, our connection stronger than that.  I often feel her presence and know that she will assist me.

Lotta and I were at the mall recently for a play date.  As we were exiting the mall, I came across some tights (I have been on a mission to find wamr tights as of late, I mean I live in Wisconsin, what better place

Lotta, an excellent hider.

to utilize thick tights?)  I stopped to peruse, Lotta standing right next to me, rearranging socks.  I turned and she was gone.  Gone gone gone.  I looked around, shouting her name.  All the racks were at my eye level, so there was no chance of seeing a tiny girl walking around.  I began to panic, once again, wondering what happens if a barely verbal child is lost.  I took a deep breath and closed my eyes, asking for Ellie to help me out.  I found myself traveling over to a rack, when I looked under the rack, I saw 2 pairs of little legs hiding, silently amongst long pants.  It didn't even feel as if I had made a conscious thought, it felt like I was led.  Thank you, Ellie!

Recently, I was having a phone conversation with my brother.  We were talking about changes and loss, when he seemed to get uncomfortable.  He told me that he couldn't even compare any other loss with the loss I had experienced.  It took me a minute to figure out what the heck baby fire he was talking about.  Oh yeah, he's talking about Ellie.  Because I no longer consider Ellie "lost", she is a part of our lives.  I no longer feel continually lost as I once did, I feel ready to begin on the next leg of my journey...