Looking for the Perfect

May 18th, 2012

 

Ben and Lotta snuggle at the end of the slide. Perfection.

In a recent article by Martha Beck (a life coach who often writes in Oprah Magazine), she described how she was running a training of coaches.  The conclusion of the training was to be an adventure involving horses.  Right as they arrived at the horse stables, the sky dumped a torrent of rain.  Martha asked each participant what was perfect about the situation.

I have been practicing looking for the perfect in each situation (when I am not too crazy to recall this wonderful tidbit).  Whenever I find myself becoming disappointed, frustrated, angry, if I am able, I stop and ponder what is perfect.  It totally forces me to re-focus my attention, to look for what I like rather than what I don’t.  For example, this morning, Lotta and I were meeting our favorite PICU nurse, Katie and her baby, Cash at the zoo.  Somehow we just could not find one another.  I found myself begining to panic a little bit, knowing that our window at the zoo with 2 little people who will need naps soon was small.  Then, I just decided to relax and enjoy the weather (it is a perfect day today).   When we kept missing eachother, I even texted her a photo of Lotta and I to show her what we looked like.  I thought afterwards how fantastic it was to not go into full panic mode, to just relax and see whatever animals we happened to see.  Even though we did not get to visit with Katie and Cash as long as we had anticipated, we had a lovely visit the time we did have together.  Hope this doesn’t sound trite or overused (“when life hands you lemons make lemonade!!”)  Just wanted to share how helpful this has been in the hopes that it might be helpful to some of you too.

 

Thoughts on Mother’s Day….(the 13th btw)

May 16th, 2012

First attempt at annual Mother's Day family photo...

“Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.”  Elizabeth Stone

Sometimes I feel jealous of the younger me.  Not for the reasons you might think–youthful beauty, innocence, coolness (Thom would wonder, “Were you ever really cool?).  The other day I was sitting in the green room looking at the photos on the wall.  One of them was taken a few days after Ellie passed.  I am wearing a pink hat given to us by a hospice nurse that says, “jilled”, snuggling up to Lotta.  As I looked at the photo it amazed me that I even took a photo so soon after Ellie passed.  Then I had that old yearning.  In that photo it had been mere DAYS since I had seen, felt, touched, smelled Ellie, whereas now it has been almost a year and a half.  How I yearned to be that younger me, the one who had so recently been in Ellie’s physical presence.

Angel watching.

Recently, I drove past the funeral home that cremated Ellie, as I often do.  As I passed it I suddenly was struck, it felt as if I was literally punched in the stomach with the feeling I had the day the funeral home took Ellie’s body.  The moment they carried her body down the stairs, I wanted to race at them, demanding that they NOT take my daughter.  At the same time, I absolutely knew how irrational the whole thought process was.  That desperate feeling engulfed me, making for quite dangerous driving conditions, as you can well imagine. Time continues to move at an odd pace.  At times it seems so long long ago when Ellie was with us and then it flips suddenly seeming so recent.

This last week, Lotta caught a cold.  Saturday was the worst of it, she was lethargic and couldn’t keep anything down and started breathing in a wheezy way.  Growing up experiencing asthma I have an extremely low tolerance for hearing my children struggling to breathe.  Lotta progressively got worse throughout the day.  By 3am, as she lay shaking the bed in her attempts to pull in oxygen, I decided it was time to go to the ER.  What a wange (weird strange) time to go to the ER.  First of all because it is 3am, which to my way of living, is not a typical hour I am driving around town.  Second, it was wange to go to Ellie’s hospital.  Somehow I felt as if I might encounter Ellie there.  I mean really all the experience’s we had there, they should just rename the whole place.  Sheesh.  One of the first things our ER nurse said to Lotta as he put on her respiratory monitor was, “You’re not in trouble”.  Which, as you may or may not know, was one of Ellie’s favorite things to reassure others.  Thirdly, Lotta is the exact age Ellie was when she was diagnosed with a brain tumor.  Everything but everything was so incredibly frightening to sweet Lotta (and sweet Ellie or “Swellie” as she would probably say).  Even putting the ID bracelet on, listening to her breathe, looking in her ears, were extremely upsetting.  All of it was terrifying.  It also amazed me how, particularly in the ER, where everything is URGENT, I can be talked into things like rectal thermometers, chest x-rays, which in the light of day seem CRAZY. As we were going through it, I had a moment of worry that this was going to scar Lotta emotionally.  Then, as we were leaving, Lotta was walking around, making friends with one of the nurses (just like her sister would have!)  Not a trace of what had happened left on her, except for of course that she was now breathing easier.  They are so resilient at this age.  AND I am greatful that we somehow survived Ellie’s hospital experiences and that Lotta and Ben are getting to experience something different.

Sink or Swim

April 28th, 2012

Ben plunges into the water at the front of the Memphis Zoo. Lotta, of course, follows.

Thom has been helping out with swimming in Ben’s class gym class every Wednesday.  This last Wednesday, as we were walking home from the bus stop, Ben excitedly described how Thom held him in the water while he was floating on his back.  Then, Thom would let go and allow Ben to float on his own for a moment.  At the end of the story, Ben exclaimed enthusiastically, “I only drowned twice!”

Magical Paducah

April 27th, 2012

Ben having his morning cup of joe in the car.

Our plan was to drive halfway from Pranee to Madison on Easter Sunday.  It is about an 11 hour drive, so breaking up the trip seemed the most humane thing to do, particularly for 19-month-old Lotta.  Because Pranee is way way way out in the country the first part of our trip is lots of windy, hilly, picturesque roads.  Beautiful and scenic, yes, but they certainly don’t get you anywhere fast.  For sure.  We decided to stop for dinner in Paducah, KY around 5pm.  We had not booked a room at a hotel because Thom suggested we wait to see how far we could go.  Not my usual way of doing things, but I agreed because I know on long car trips, with small children, things can change suddenly.

Before stopping for dinner, Ben proclaimed that he wanted pancakes OR hot dogs for dinner.  The diner I’d researched to eat at was closed so we decided

Lotta played with the phone for awhile...

on a Bob Evan’s instead.  Ben ordered and consumed a plate of silver dollar pancakes.  He was pretty psyched there were 5 on his plate.  I was feeling mighty tired and a bit weary, wondering how we were going to drive another 2 hours, get checked in, swim, and still get the kids to bed at a decent time (Ben no longer sleeps in, so when he goes to bed late, he merely loses sleep which oftentimes leads to losing his sense of humor.  Nobody wants that!)  As we piled  back into the car after our meal, Thom turned the ignition and all the red lights went off and the car started beeping.  Oh boy, not a good sign.  He turned the car off and tried again, just to make sure that was really really what the car wanted to say.  Yep.

Right next door to the Bob Evan’s just happened to be a Drury Inn.  The kids and I went over to investigate while Thom poked around the car.  When I asked about a room, the friendly front desk person said they were just

Lotta requests no more photos. Please. Enough.

finishing up a food buffet that was included with the room.  Since Lotta had not eaten much at Bob next door, thought this would work out well for her.  Turned out it worked out even better for Ben because on the food buffet were, hot dogs, “just like they serve at school!” (That’s a good thing in Ben’s mind.)  They even had Lotta’s favorite food right now–popcorn.  Afterwards we went swimming (yes on a very full stomach) in an indoor pool with only one other family present.   When we were all cleaned up and ready for bed, I flipped through the stations and found the documentary, Being Elmo (a documentary about Kevin Clash the man who does Elmo on Sesame Street), which I have wanted to see since I first heard about it maybe a year ago, being televised.    Inspirational!

Meanwhile, Thom had researched car dealerships and auto shops to discover where to take the car in the morning.  Much to his amazement, there was a Toyota dealership/repair shop a half block away from the hotel.

In the morning while the kids and I ate and ate and ate at the breakfast buffet (Ben uses these buffets to try a sampling of everything), Thom drove the car to the dealership and walked back to join us.  In a little over an hour, the car was fixed (it was a pine needle stuck in the air filter) and by 10am we were back on the road.

I was concerned about Lotta’s ability to stay in the car for the 7 hours left of our trip.  However, any time Lotta started to get upset, I would turn around and say, “Lotta a TRUCK!!”  or “a COW!!”  or whatever we might be in the process of passing.  She, not wanting to be left out of the excitement would respond with, “WOW!”  We made frequent stops to make it all bearable for everyone.  I had a hankering for pizza for dinner and as we pulled off the exit in Rockford, we drove straight into the parking lot of a conference center.  The first restuarant we came across was a bar type place which was nearly empty.  While my brother, Kip, takes this as a sign that the restaurant is no good, I take it as a possible “find” that no one else knows about.  Our pizzas were fantastic and the kids were able to walk around the restaurant and even the hotel without disturbing anyone.  Just the perfect ending to the perfect trip.

 

Relishing

April 26th, 2012

Last year, I read Carol Burnett’s latest book, This Time Together: Laughter and Reflection (2011).  At the beginning of the book she talks about how she and her Grandma (who raised her) enjoyed going to the movies when she was growing up.  Even when they could barely scrounge up money for other items, they always found a way to go to the movies.  When she was maybe 7, she went to see a movie with Jimmy Stewart.  As soon as he came on the screen, she held her breath.  She was mesmerized by him.  Could not take her eyes off of him.  When they left the theatre, she told her Nana that she and Jimmy were friends, it just hadn’t happened yet.  Later, she and Jimmy did become good friends.

To have that kind of knowing, that kind of vision.  That is where I am aim to be.  When you are totally and completely lined up with your dream for your life.  Nothing could be better.  Ben is so good at this.  Right now, Ben is superbly exuberant about two topics –Legos and pets.  As you may or may not know, Ben received a Beta (a really colorful fish) for his birthday.  Now he wants to get a bird.  For a few days this week he was super excited about some of the Lego sets in his Lego magazine.  After school, he pored over the catalogue, discussing what he would do with each set.  From these discussions he has found new ways to play with the magnificent sets he already has.  What I love about his desires is how pure they are.  He doesn’t think, “Oh I love this set, and I can’t have it because it costs too much…”  He is not caught in the how it will happen, just the knowing that it will.  When we do the gratitude journal, he will say, “I am greatful for my new Lego set.”  He has absolutely no doubt in his mind that his Lego set or pet or whatever he is excited about is on its way.  He relishes the excitement and anticipation of the fun that is on the way, rather than bemoaning that it is not here yet.  For him, the journey is almost, not quite, but almost, more fun than the end result.

 

It’s All About Interpretation

April 25th, 2012

By the big waterfall with my fantabulous nieces, Bella and Sophia.

While on our trip in Tennessee, my lovely, talented, brilliant niece, Bella, guided me up the side of the waterfall.  We walked through a gorgeous creek, surrounded by trees, winding its way around to not one, but two heart- shaped pools.  (And to make things interesting we made sure to touch as few bugs as we could along the way.)  As we walked, I looked down and spotted a white heart-shaped leaf.  I picked it up, feeling as if it was a message from Ellie.  Bella said it reminded her of angel’s wings.

While we were exploring, Susan. being Super Sister and all, began to wonder if we were ok.  Susan inquired of Dariush how long we had been exploring.  Four-year-old Dariush patiently explained that he has in fact not learned to tell time at this point in his education, something he plans on learning soon-ish, however it seemed to him as if we had been gone a “long minute”.  Susan decided to ascend the fall and

On top of the waterfall. I made it!!

make sure a rescue was not needed.

When they found us, Dariush suddenly told Susan he needed to go.  Like RIGHT THEN doing a pee-pee dance gotta go.  Susan recomended he utilize nature as his bathroom.  Before we could do anything else, Dariush, said, “But it feels strange.”  Susan said, “Oh, well, I thought you would actually pull your pants down to go.”  I just imagine when Susan said he could go, Dariush suddenly thought, for some inexplicable reason, he had a diaper on, so away he went.  Boy was he surprised when that was not the case.  It also made me think of how often we think we are saying one thing and the person we are communicating with is hearing something completely different.

When I returned to the Big Red Barn (where we eat and sleep and bathe and hang at Pranee), I produced the white heart/angel winged shaped leaf to show everyone.  I laid it on the table.  Lotta picked it up and crumpled it and threw it on the floor, as if to say, “What’s this trash doing on the table?”  Funny.  Again, felt like what I was explaining and what Lotta was hearing were 2 entirely different things.

Honey

April 19th, 2012

Sprinkling rose petals over Ellie's site.

Over spring break, we took a trip to St. Louis, Memphis and on to Pranee (the beautiful, magical land my sister and brother-in-law own in the middle of Tennessee where Ellie’s cremains are buried).  One day while I was getting ready in Memphis, I (in my head not out loud) told Ellie that I was available for a conversation if she wanted to tit tat (talk chit chat).  Suddenly I smelled honey.  I thought, rationally, I do have Burt’s Bees Baby lotion.  But it was in a diaper bag across the room and had not been opened since the previous day.  Then I pondered what does honey mean?  What could Ellie possibly be telling me?

Then I got it.  “Honey” was the term of endearment she liked to be called.  When she was a tiny baby I called her all sorts of nicknames, since she couldn’t protest.  The one that stuck was “sweetheart”.  Well when she was maybe 4 or 5, she told me she preferred to be called “honey”.  This was a challenging transition as I had heretofore been referring to Thom as “honey”.  After

My mom snuggles with Lotta Joy.

much prompting on Ellie’s part, I finally adjusted to calling her “honey” and sometimes “honey bunny”.

Near the end of her life, I sometimes slipped and reverted back to “sweetheart”.  One day my mom was sitting with Ellie, a day when Ellie was no longer verbal.  My mom called her “sweet heart”.  Ellie scrunched up her face and shook her head vehemently.  My mom was shocked at such a strong reaction, when most of the day Ellie had been laying in bed, not moving, just looking around.  My mom asked if Ellie wanted to be called “honey” and Ellie responded with a head nod to the affirmative.

Wange huh?  Sweetheart would definitely be harder to send as a signal, don’t ya think?

Dagnabbit Those Delcious Chocolate Chip Cookies

April 18th, 2012

Yesterday Lotta and I went to Willy Street Co-op to do our weekly grocery shopping.  (You all know that Willy Street Co-op has been an emotional minefield since Ellie passed, as this was our favorite “date” place for quite a while.)  As we passed the big container of store made chocolate chip cookies, I suddenly had that sharp edged longing for Ellie, wishing so desperately that I could be buying a cookie for Ellie or even frustrated that this was the only food she would consume.  Wishing to be frustrated.  Seriously?  I held it together pretty well but  the floodgates opened when I received a call from Thom in the pasta aisle.  Lotta looked at me with eyes filled with concern, as if she too might join me in a good eye-washing.  Then instead of 2 girls standing around chewing gum (did I mention Lotta adores gum?), we would be 2 girls weeping in the pasta aisle.  After I held Lotta for a minute, she jumped out of my arms (can’t keep her stationary for long) and took matters into her own (little) hands.  She began to push the cart of out of the aisle, as if to say, ‘We gotta get outta this sad sad aisle mom!”

Later  I was contemplating the 90 second rule I’d read about in an article by Martha Beck in Oprah Magazine.  She said that neuroscientists have discovered that it takes our body 90 seconds to cycle through the hormones that are released when we feel an intense emotion.  Now when I find myself in a despairing moment, I think to myself, 90 seconds, I can handle this for 90 seconds.  And suddenly when I stop resisting it, I find that I can actually survive this overwhelming wave of emotion that originally I did not think I could.  Maybe next time I pass the cookies, I will get one and savor every bite in honor of Ellie.

Winning to Lose

March 14th, 2012

Kirk holding baby Lotta

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.  

Seeing Ellie

March 12th, 2012

Ellie and her siblings and her Aunts Sara and Amy

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.