A broader perspective

[caption id="attachment_2050" align="alignleft" width="300" caption="Ben has a crazy moment...always pretend to be asleep in the face of "crazy". "][/caption]

Every once in awhile I feel  as if momentarily I can see a broader perspective.  After we discussed the possibility of Ellie having another resection (aka replacing the shunt or brain surgery), I was feeling bad bad bad. There is this part of me known as "Crazy Mamma" that comes out in these moments.  I envision her running around in circles waving her arms in the air screaming, "OMG! Ellie's going to die!  We can't do brain surgery once a year!!!  I can't handle this!! AAAAAAAAAAAAAAHHHHH!!!"  

[caption id="attachment_2051" align="alignright" width="300" caption="The whole pretending to sleep thing did not work out, screaming is the next step."][/caption]

Then, suddenly, I had this moment where I just thought about how there are mothers all over the world whose children are not feeling well.  Many of these mothers may not have access to any of the amazing choices I do for their children.  I thought about how the hospital we go to today was at one point just a desire someone

[caption id="attachment_2052" align="alignleft" width="300" caption="Why do I not feel better?"][/caption]

had to treat children who were not feeling well.  That the hospital was created because there were people who had an idea that they wanted a place to take a child where they could do something to assist.  From that desire the hospital was born. 

There was a time in Chicago when going to the hospital was such a traumatic experience that on the way home I actually had a vivid moment of wanting to drive the car into the median.  Just couldn't take it any more.  Almost everything that would happen at the hospital was terrifying to Ellie from getting her blood

[caption id="attachment_2055" align="alignright" width="300" caption="At this point you may be wondering why I did not in fact put the camera down and respond to the upset at hand. I am wondering the same thing. The only thing I can think of is that we were on vacation and wanted to capture even the messy moments..."][/caption]

pressure checked (which they could not even measure because she was so upset) to getting her temperature taken, not to even mention trying to get a blood draw or an IV going....And there was a time when we lived in Chicago that Ellie felt nauseated almost all of the time.  It was unbearable.  The suggestions that were given were not exceedingly helpful--we could start chemotherapy (doesn't seem like a good anti-nausea treatment) or give her therapeutic steroids (which completely disrupted her sleep).  Leaving us feeling like we were at the end of the line with no good options being offered.  The point is that right now we had a fairly easy (it IS still brain surgery) straight forward option that looked as if it would solve the problem of Ellie throwing up and sleeping a lot.

Now going to the hospital has transformed into an experience that has some unpleasurable items, but for the most part, it feels like the hospital is filled with people that we know and love.   Not only is our hospital the absolute best in my opinion, but it is 10-15 minutes from our house.  AND we have spectacular health coverage.  From this perspective of feeling gratitude for the hospital and all that it has given us, I could no longer feel badly about going there.  Then I started thinking about how maybe our experiences are leading to a time when there will be no more brain tumors.  Wouldn't that be amazing? 

[caption id="attachment_2057" align="alignleft" width="300" caption="Ben in an unhappy airplane moment...."][/caption]

The new social worker came in to visit me while I was sitting with Ellie in the hospital.  Ellie was sleeping off the surgery and I was having a grabulous (great + fabulous) day sitting reading and responding to e-mails from people I love, working on a blog, and watching a documentary.  I must admit that it was a muchmore relaxing day than had I been at home.   When the social worker entered the room, she asked how was I hanging in there?  I kind of looked at her strangely.  It didn't feel as if there was anything I needed to "hang in there" about.  I realize if I really sat and thought about brain surgery or tumors or the saddest moment I could come up with something, but who would that help?  It

[caption id="attachment_2060" align="alignright" width="300" caption="A more content plane moment."][/caption]

reminded me of when Michael J. Fox (I know I know, MJF, again??)  couldn't comprehend "coping" because he was just having a great time LIVING his life.  In no way did I feel as if I were "hanging in there", I was having a terrific day.  I know it is hard to imagine and hard to know how to respond to this kind of reaction to one's daughter being hospitalized after surgery.  If I were you, I wouldn't even know what to say to me.  It's as if a whole new language needs to be developed.  If you come up with any ideas, leave me a comment.

Movie Star Encounters

[caption id="attachment_2004" align="alignleft" width="300" caption="Ben plays, "Hollywood" with my sunglasses."][/caption]

And now I must admit where my fascination of Michael J. Fox began...

When I was in high school, Michael J. Fox was THE man.  When he made a guest appearance at our local amusement park, I was there with some of my girlfriends sitting near the front row.  I had on my favorite pair of sunglasses, they were yellow and had pointy tops and iridescent lenses.  I wore them as much as I possibly could, even at night (there was a song entitled, "I wear my sunglasses at night" that inspired that action).  Well, when Michael J. Fox came on stage, he said, "I like your sunglasses."  which made ME like my sunglasses even more.  (Until another area KC teenager told me that he had actually said it to HER, but I don't want to think about that part of the story, it sort of ruins the connection between Michael J. and I...Can you imagine, the gall of someone else taking the complement so obviously directed at my sunglasses?!?)

[caption id="attachment_2005" align="alignright" width="300" caption="Someone told me they thought Thom & I looked like an urban, celebrity couple in this photo..."][/caption]

Then, when Thom went on a business trip to L.A., I accompanied him.  (Hello, completely paid for swanky hotel, I'm there!)  One day as I arrived at the elevator one of the actors from the then popular television show, Spin City also walked onto the elevator (this was the actor who was also in the movie Ferris Beuller's Day Off).  We sort of just said "hi" and then rode the elevator down in silence like normal people do.  Then another day, we got on the elevator at the same time again.  I started to feel a little strange, thinking he might think I was following him, even though it had truly been a coincidence.  Then, I think it happened one more time and I began to wonder if perhaps HE was following ME....but I never saw him again after that. 

While working on my master's program in C hicago, my sister and Ghany (now her husband) came to visit me.  They were staying at the Blackstone Hotel, right down the street from my residence hall.  It just so happened that Paul Newman was shooting a film in the hotel during their stay.  Ghany kept going to the ballroom where they were  filming and trying to take pictures, before he was asked to leave the area.  At one point, as Ghany & I stepped into the elevator, I noticed that Paul Newman was getting in beside us.  We said hello and chit chatted about the board games I was carrying.  Ghany stood beside me, mouth agape, not saying a word.  Speechless for the first and last time I have ever witnessed.  Paul Newman was just a man and I was easily able to converse with him. 

[caption id="attachment_2003" align="alignleft" width="300" caption="My mom, Gordan, Moffat at Sesame Street"][/caption]

But  pay back time came for me with all my smugness over the Paul Newman incident.  When we went on our Make-A-Wish trip, Gordon and Maria were filming a scene.  As Gordon passed me in the hall, I was completely starstruck and tongue tied.  I couldn't believe it.  Then I was  doubly embarrassed when I saw that my mom and Moffat had been able not only talk to him, but have their picture taken with him.  UGH!

Invisible

[caption id="attachment_1983" align="alignleft" width="300" caption="Ellie waiting to take the Limo to Sesame Street to meet her pal Zoe."][/caption]

Recently we decided to watch our Make-A-Wish video, which we do sporadically since the trip four years ago.  Well, all the sudden, Ellie asked, astonished, "Who is that person?"   she noticed that there was a woman actually holding up Zoe.  It was the first time that she saw her, even though we have viewed the video countless times.  

[caption id="attachment_1987" align="alignright" width="300" caption="Zoe has her photo taken."][/caption]

It reminded me of a story   about the first ship that came across the Atlantic Ocean.  The native peoples living on the land could actually NOT see the ship.  They saw nothing in the water, it was so far beyond their imagination.  It was invisible to them.

Another story I read recently in The Art of Possibility by

[caption id="attachment_1989" align="alignleft" width="300" caption="Ellie in her Zoe outfit on Sesame Street with Agogo & Uncle Kippy."][/caption]

Rosamund Stone Zander and Benjamin Zander (Boston, MA: Harvard Business School Press, , 2000) .  Picasso is riding on a train and a fellow passenger asks him, why he won't paint more "realistically".  The man shows Picasso a photo of his wife to illustrate what a "realistic" picture would look like.  Picasso studies the photo and asked the man why his wife is so small and flat. 

[caption id="attachment_1990" align="alignright" width="300" caption="When Ellie refused to wear a visitor pass on Sesame Street, Zoe stepped in to help out. "][/caption]

Einstein argued that it is impossible to utilize observation to create a theory because in fact a theory governs what we can and cannot observe (The Art of Possibility by Zander & Zander). 

Made me wonder what possibilities are invisible to me.

Likove (like + love)

[caption id="attachment_2013" align="alignleft" width="300" caption="Oh those first two bottom teeth. ADOORable!"][/caption]

Ellie discovered after returning home from the hospital that if her head were hurting, laying down made the hurt go away.  A terrific thing to discover and what a wonderful, easy solution.  This morning when she told me her head was hurting, I suggested she lay down.  Because honestly, her head hurting actually hurts me, so I want that pain to go away fast for my own selfish reasons.  When I suggested she lay down, she insisted that we call her Uncle Ghany to sing him Happy Birthday before laying down.  You can imagine how we raced down the stairs to make that call. 

This morning, a day after returning home from the hospital, Ellie told me sincerely that she likoves (like + loves) everything in her life.  I am in awe of her ability to be so present to today that she doesn't even hold going to get a blood draw this morning in her list of grievances.  And she informed me yesterday that the only thing she didn't like about being at the hospital was the times that she couldn't eat (of which there were quite a lot this time around).  Not to even need a recovery period, but to jump right back into the love, incredible.  The great thing for me about a hospital stay is how it washes everything clean.  All the things that were bugging me before our hospital stay seem insignificant.  I feel washed new, just happy to be home again having a "normal" day.  How did we get so fortunate to have this great teacher living in our home?  (She just burped, so that was pretty good timing to let me know, that she is in fact having a human experience too.)

Just a thought

[caption id="attachment_1971" align="alignright" width="300" caption="Ellie looks like a movie star getting out of her limo on her Make-A-Wish trip"][/caption]

When we were told Ellie might have to undergo another surgery, I was devastated.  I know it is hard to tell from these blogs that have rolled outta me.  But seriously, you can call my sister.  Devastated.  Then I started thinking about a quote I had read that morning about how people used to think the world was flat.  They thought this because they couldn't see the full picture. 

[caption id="attachment_1973" align="alignleft" width="300" caption="A picture of Ellie and baby Gracie, the doll she took with her to chemotherapy each week."][/caption]

And I suddenly had the realization whether or not we are in the hospital or out, having surgery or not having surgery, I cannot see the full picture.  I had no idea what wonderful things might occur, right around the corner.

My brothers have a cousin who died from the same type of brain tumor (astrocytoma--made of  my

[caption id="attachment_1974" align="alignright" width="300" caption="Kip and Kirk express their love in a manly way."][/caption]

all time favorite supporting brain cell that looks like a star) in the same location (hypothalamus/optic nerve).  He was two years old.  That was probably4o years ago.  Now, Ellie has been able to live an amazing life for 9 and a half years.  Do you think I feel greatful?  You betcha, because they have been the most amazing, astounding 9 and a half years of my life. 

At the begining of his book , Lucky Man,

[caption id="attachment_1980" align="alignleft" width="300" caption="Proof that Ellie did in fact eat something fresh in this lifetime. She will deny it."][/caption]

Michael J. Fox states that if anyone came to him and said they could take his Parkinson's Disease away and he could go back to the life he lived 10 years ago, he would tell them no way.  Because, "For everything this disease has taken, something with greater value has been given (Good Housekeeping, April, 2009; volume 248, no 4)."  I couldn't agree more!  Are you beginning to get the feeling that I am a HUGE Michael J. Fox fan?  I admire his ability to face a challenge and not just tolerate it, but appreciate it.  He has found the gift in a seemingly huge challenge.  Wow.  I'm in awe.  (Not to worry Thom, you're still my one and only guy.  I wouldn't trade you for anybody.)

[caption id="attachment_1977" align="alignright" width="300" caption="Ellie at the hospital in Chicago. "][/caption]

A few years ago no one would have been able to convince me that we would have such an amazing team of people caring for my daughter.  That seemed absolutely impossible.  Hospital=stress to me then.  Now I see around me friends, alliances, that we are all in this together.  There is a certain amount of relief that comes to knowing that I am not facing this alone.  That there is a whole team of experts who all want the best for Ellie. 

As Ellie was getting her second MRI Tuesday, I contemplated  how completely amazing it is that we can take a picture of the

[caption id="attachment_1979" align="alignleft" width="300" caption="There she is in silly town."][/caption]

brain.  I mean not that long ago this was just a figment of some one's imagination, the idea of being able to see INSIDE a person's body without cutting them open.  Amazing.  I wonder what is just a figment of our imagination right now that in a short time will be a normal part of our reality....It certainly is an extraordinary time to be alive.

My socks are mocking me

As I walked into the recovery area, I heard a wailing baby.  It broke my heart.  I thought, I wish babies didn't have to suffer that way.  Then, as I came closer I realized the wailing sound was in fact, my sweet daughter fresh from surgery.  Oh how I wished in that moment, as I recalled all of the many times I have sat with her after surgery or before surgery any time that she has been in pain that I could somehow put her back in utero.  She seemed so protected there and safe somehow as if I had some control over all this craziness.  It seemed an absurd notion to take this stout 9-year-old and try to shove her back into my body.  As she lay there, Ellie kept muttering how she did not feel happy.  Which is the exact opposite of how she typically is feeling--grabulous (great + fabulous), joyburstish, happy.  When she was younger, I would sing to her in these situations, but Ellie insisted she did not want a song.  That left me searching desperately for something to distract her, I started to tell Ellie how Ms. Zwart just sent me an e-mail telling me that she was sending Ellie a huggle snuggle.  As I told Ellie, she got that "surprised" look that is her favorite right now and she was back to her old self.  Ellie was complaining of her head hurting and I saw the incision on her head and wanted to scream.  I thought of this scene from Mad About You when Helen Hunt's character is delivering a baby.  Her mother, played by Carol Burnett becomes so upset that her daughter is in pain that she has to be sedated.  In my head, that was exactly how I was feeling right then.  "Why haven't we given her something for the pain??"  I wanted to change my mind about inflicting this pain on her right now.  Then I looked down and there on the bed were my happy face socks I'd worn today because I knew that Ellie would like them.  I thought how bizarre to be wearing happy face socks at such an unhappy moment.  I wanted to rip the socks off or at the very least change them into sad faces.  I think a lesson can be learned by all, that your socks will be with you for the rest of the day, so take care when you pick them...I know we will all feel better soon, but that wailing is still quite fresh.

Ben's Make-a-Wish comes TRUE!

[caption id="attachment_1943" align="alignleft" width="300" caption="Are you kidding? We get to go to the hospital?"][/caption]

As we were waiting and waiting and waiting at the hospital today to decide whether or not we were going to "check in" as I like to call it, the rest of us were starting to lose our patience.  OK, not even starting.  Well, as Ben was spinning and spinning and spinning in the doctor's chair, he suddenly shouted exuberantly, "This is my WISH come true!  I love being at the hospital!" What an

[caption id="attachment_1963" align="alignright" width="300" caption="Ben in the limo during our original Make-A-Wish trip, not as enjoyable as his hospital visit..."][/caption]

astounding moment, to know that even in this moment when all the rest of us were ready to go home already, here was Ben having the time of his life.  There are so many things he adores at the hospital, even beyond the fabulous ice cream they serve there (made from University cows).  He thoroughly enjoys the family kitchen where everything is small--little boxes of cereal, milk, juice--it's as if a tiny world were created just for him.  The many elevator buttons to push.  The play rooms.  The rooms with windows that make

[caption id="attachment_1964" align="alignleft" width="300" caption="Ben explores the elevator on that "other" Make-A-Wish trip..."][/caption]

everything look  so tiny down below.  Did I mention the play rooms?  The fish tanks.  The special lighted instruments hanging on the walls.

It reminded me (once again) of a quote from Michael J. Fox.  

[caption id="attachment_1965" align="alignright" width="300" caption="Ben & I on the Make-A-Wish trip, again, he certainly does not look that entertained..."][/caption]

"When people give me this sad face and hug Tracy and say, 'You're so strong', we roll our eyes because we're having a really good time (p 132, Good Housekeeping, April, 2009)."  He said that people will often approach him asking him how he copes and he thinks, "...Cope?!  It's really hard to even think that way..." (p 198, Good Housekeeping, April 2009).  I want all of YOU to know that we are in no way 'coping', we are doing our best to LIVE and as Ellie says be "joyburstish".