Seven years ago today

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Some events for ever after change the course of life as you know it.  One of those events happened 7 years ago today (and one month after September 11, 2001).  That was the day that it felt like someone took a rock and smashed the plate glass of my life, shattering everything.  That was the day my 20-month old daughter, Ellie was diagnosed with a brain tumor.  After an emergency MRI (our very first one), the ER doctor told us that a little something had shown up and she encouraged us to go by ambulance to the University of Chicago Hospital.  I counter offered that we could go home and wash Ellie's hair (she still had EEG goop in it from our very first EEG that same morning) and go there afterwards.  (We have since discovered that hospital personnel don't typically accept counter proposals, but we were newbies to the whole scene at that point.)  Ellie & I rode in the ambulance together, she strapped to the gurney.  I told her she was a Queen and that was her chariot.  Thom raced behind us in our car.  I recall chatting up the ambulance personnel, so filled with nervous energy and anticipation was I.

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I had phoned my sister and our fabulous friend Betsy C. from the ER to let them know what was happening.  When my brother-in-law, Ghany , an anesthesiologist, heard her diagnosis, a line of explicatives emerged from his mouth that would have put Chris Rock to shame.  Meanwhile, Betsy C. jumped in her car and raced to the hospital and as destiny would have it, she met Thom in the admissions department.

When we arrived at the hospital, we were sent to the PICU and told that Ellie would need surgery in the morning, as she was on the verge of brain damage.  I was shocked.  The tumor was so big that the cerebral spinal fluid (CSF) was causing hydrocephalus (too much water on the brain).  With too much water, the electrical signals in the brain cannot be sent properly.   Both my mom and Thom's mom were on their way to Chicago to be with us the next day, this was a two-mom emergency!

The next day just happened to be Thom's birthday.  As you can imagine, we didn't feel much like celebrating.  When the doctors explained exactly what they would do to Ellie during surgery, Thom began to cry.  Even though I'd known him for 12 years at this point, it was only the second time I'd ever seen him cry, the first being when Ellie was born.

My older sister, Susan lives in Memphis.  Every time she talked with Betsy C, she wanted to make sure that I was eating.  So while Ellie was in surgery, Betsy C. took me to the cafeteria (you don't want to disobey my sister when her maternal extincts kick in).  Walking to the cafeteria was strange b/c I was so used to having Ellie beside me, talking to her, pointing things out or counting things along the way.  Then once we arrived in the cafeteria, trying to decide what to eat just felt completely and utterly beyond my abilities.

[caption id="attachment_184" align="alignleft" width="300" caption="Betsy C & Ben in Florida (1/08)"][/caption]

Betsy C.  essentially put her life on hold to help us out while Ellie was in the hospital for 2 weeks.  Anything we needed at the hospital, she would get for us.  While Ellie was in surgery, Betsy C & Thom & I marveled over the fact that this was the longest that we had ever been away from Ellie and that there had never been a time in Ellie's 20 month life that she had not been with one of us.   Betsy C. was the first one to come to the hospital the day that Ellie was born.  One day when Betsy C needed to be at work, she sent her mom to visit us in the hospital as I was having a melt down that day.

I recall dozing off in the lounge off of the PICU and then waking up to rediscover that my life had what felt like at the time turned into a nightmare.  That crashing down effect after sleeping made sleeping at the time quite unappealing to me.

After we stayed in the PICU for several days, we were given a room at a nearby Ronald McDonald House.  This allowed for one of us to go to Ronald McDonald house while the other parent stayed with Ellie.   One day as I was walking from Ronald McDonald House back to the hospital, I walked past this person who was homeless.  He looked at me with such sympathy.  Everything in my life felt inside out and upside down.

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At one point, Betsy C. said she imagined a big committee up in heaven sitting around a conference table with 8x10 glossies.  They were discussing this rather challenging case of a little girl who would go down to earth and have a brain tumor.  They were deciding who would be selected.  Thom & I were discussed as a possibility and the committee wondered if we could handle it.  Deciding that we could, they sent this sweet angel to us.  Every since Betsy C. told me this beautiful story, I have felt honored to have been selected to be Ellie's mom.  Because the struggles and challenges seem minor in comparison to the joy and love and depth that she has brought to our lives.

I recall thinking after Ellie's surgery that I would never ever recover from it.  The whole experience left me feeling unmendable in some way.  But, here I sit today, playing office with Ellie (that's where I work on something and she works on something as if we were office mates.)  Sure, sometimes I still feel sad or despondent, but those times are much much less than the times that I feel in awe of our lives.

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I just finished reading a profound book entitled, About Alice by Calvin Trillin (2006).  Alice & Calvin (husband and wife) worked at a camp each summer for children facing serious medical challenges.  One year Alice befriended a little girl they called "L" in the book.  L was unable to grow and unable to digest food.  Alice wondered what the parents had done so that a child facing such severe health challenges could be so magnificent.  As they were playing duck duck goose, Alice decided to sneak a peak at a letter from L's parents.  In the letter, L's parents said, "If god had given us all the children in the world to choose from, L., we would only have chosen you (p 66)."  Although I don't always reach it, that is what I strive to show Ellie.  I want her to feel, that she is, as Madonna so aptly put it, our shining star.