My wise children

[caption id="attachment_2302" align="alignleft" width="200" caption="Ellie at the zoo with her class last year."][/caption]

I think before I had children I had this delusion of my children being these little vessels to which I would pour all of my wisdom and knowledge.  I laugh at this former version of myself, so naive, so confident.  Now I see how so much of the wisdom flows  from these two amazing beings. 

Here are a few insights Ellie has had for me (I know some of you have already heard some of these, so you have my permission to skim...)  One day Ellie was singing a song about how much she loved herself and she suddenly stopped and said, "Wouldn't it be funny if I were singing a song about how much I hated myself?"  It struck me, thinking about how many of us ARE walking around singing a song about how much we hate ourselves, how this inward song could pepper every aspect of our day.   When I shared this with Ellie, that sometimes when people do not love themselves they do things that are not so nice to other people and she was downright shocked that this could be so. 

Another day Ellie pondered how funny it would be to talk about all the things that bugged us.  Again I was struck, how often we see someone and begin to discuss all the things that are buggin us.   And then we wonder why we are feeling annoyed. 

[caption id="attachment_2300" align="alignright" width="200" caption="Ellie smiley in class last year."][/caption]

Ellie has been into the concept of "jofillage" (joy+filled+village).  This is when Ellie is so happy that she feels as if she is living in a village, where everything seems filled with joy.  That is where she lives most of the time (rather than in sick village or brain tumor village).  I was pondering how my brother-in-law was worried about how sad it would be to work at St. Jude's hospital.  He discovered that it is actually a jofillage.  The children who are there are little heroes inspiring everyone who works there to be their absolute best from the person who cleans the floors to the nurses to the lab techs and doctors.  

I heard this Josh Groban song called, "You're still You" there is a line that says something about even after all you've been through, "you're still you."  That is what I feel about Ellie that she is still the sweet, angelic little girl even after all the surgeries, pokes, chemo, not feeling well.  Even with this last bought of not feeling well she rarely complained, it barely registered on her radar as a "problem" that she could not stay awake or stop drooling or remember or concentrate.  She just kept right on being herself as much as she could. 

My all time favorite Ellie words:  Fabulappy (Fabulous + Happy)

Joyburstish (so filled with joy that it is bursting out of your body)

[caption id="attachment_2306" align="alignleft" width="300" caption="Oh that Ben!"][/caption]

When Ellie was in the hospital, Ben was trying super hard to "cheer her up" by telling her jokes, doing little dances, whatever he thought it would take.  At one point, while Ellie was sleeping in the ER, Ben suddenly turned on the light switch and announced, "Shite and Rine!" (rather than the more popular version, "rise and shine").   

At one point, Ben told me that he had the "solution".  He thought that the reason Ellie was in the hospital was because she only wanted to eat cookies (and barely that).  He got this idea because he and I often discuss how well he will feel if he only eats sweet, sugary foods.  During a moment of exasperation,  I had announced that I just did not feel like a good mom if I was not at least offering my children a variety of foods.  Now quite often

[caption id="attachment_2308" align="alignright" width="300" caption="The bath fish."][/caption]

when Ben is eating something he thinks I would want him to eat such as fruits or vegetables, he will shout, "Do you feel like a good mom to me?"  He tries so hard to spread his joy in so many different ways throughout the day. 

Finally, Ben has been noticing the things he "is" lately.  For example, if we are in pottery class, he will suddenly declare, "I am an artist!"  When he is cooking, he is suddenly a chef.  When he is cleaning, he is a cleaner.  I just love how he is collecting all of these ideas together it seems so expanding, allowing him to explore all that he is, all the many avenues that are possible.   I love how it does not even occur to him that he could not add another aspect of his being.  It has made me re-think my days, "Hey I am a driver!  Hey I am a laundress!  Hey I am a chef!  Hey I am a reader!"  How wonderful to have these little wisdom givers right in my very own home and for free (pretty much).

Teeth Music

Yesterday after Ellie's arrival home, Thom & I made sure that Ellie was with one of us at all times.  She wasn't really able to walk or move about very well after being bed-ridden for 5 days.  The problem was she would not recall that she could  not do these things and end up in trouble.  For example, I was in Ellie's room diligently studying the on-line take out pizza menu, when I heard a loud thump.  Perplexed, I wondered what had made that sound.  I looked and there on the floor in a big purple heap was Ellie unmoving.  She had fallen off of her bed (which is fortunately on the floor) but the fall had knocked the wind out of her and then she did not have the arm strength to push herself up.  I bent down to try to help her up and the whole thing just sort of struck me as both sad and funny.  You know like when you suddenly feel like you have to laugh in the middle of a wedding or worse yet a funeral?  I got her all sorted out and in a better position on the bed.

Today while Thom was in the shower, Ben & I were playing "office" with Ellie (yes, it is true, Ben has gotten his "card" back and is now occasionally allowed into the bookshop.)  Ben brought all of his tools in and was playing hospital with me as his patient, where he discovered that I do not have a brain.  Every time Ben would talk about us being at the hospital, Ellie would say, "I'm sad we're at the hospital."  And we would have to remind her that in fact we were just playing hospital until she started reminding herself, "Ben is just pretending to play hospital, right?"

We received a lovely card from Ellie's school and a lot of the teachers were telling her to feel better soon.  Ellie responded, "I think I AM feeling better."  Her main teacher from last year, Ms. Zwart signed her name, "Sue" and Ellie immediately said, "Oh, that is Ms. Zwart."  Which totally blew me away.  I mean she is disoriented with place right now but she can recall her special ed teacher's first name from last year?   

As Ellie was struggling getting up out of the bath, she said to me nonchalantly, "Sometimes moving around is more difficult after surgery."  I was amazed at how she said it, no sadness or regret or even frustration, just matter-of-factly.  I informed her that every time she gets up it will be easier for her that her muscles are just remembering how to do all of these things and every time they get stronger. 

Right now Thom & Ben have built a sliding hill in our backyard (14 inches of snow will give you that ability even in a level yard.)  Ellie, on the other hand,  is sitting on her bed making "teeth music", completely entertained to be sitting, staring, making soft music with her teeth.

Ellie is coming HOME!!

Today at noonish.  More details later, gotta run, Ben in bath...

Giggle juice

This morning they must have given Ellie some giggle juice because I am telling you, everything I say is absolutely hilarious to her.  Unfortunately when she laughs it hurts her incision site, so it is sort of a laugh/grimace kind of action.  Then I tell her, "Don't laugh!"  Which only makes her laugh all the more.  For example, her monitor started beeping and said, "skipped a beat" and I commented how this sounded like a Janet Jackson song, "You skipped a beat..." of course with the appropriate Janet type of moves.  And she could not stop laughing.  Then I told Ellie that my nose keeps running and it is driving me crazy.  She could not stop laughing envisioning my nose running off of my face.  At this point, I guess I don't need jokes to make her laugh, just more giggle juice. 

So recovery yesterday took a lot longer, which was why I had not heard back from Thom.  I mean it took hours.  Here is the report I received from Thom about those hours upon hours in recovery.  "She took longer in recovery than expected."  Is it something about having that Y chromosome that makes all the details seep out of his body before he can report them to me?  I am quite certain that I would have had at the very least a 20 minute monologue about all of the events.   Or at the very least a blog.  God bless him, he can't help it.  I guess it just gives me more time to talk.

Right now Ellie is having another MRI (one that was originally scheduled for 8:30 am this morning, but you know we are on hospital time here).  When I questioned Thom as to why she is having another MRI when she didn't after previous shunt revisions, Thom told me he had no idea.  I am guessing they want a more detailed picture of what is going on than the numerous quick brain MRIs we have completed as of late.  Ellie will be really really happy when she awakens because she will be able to eat again, something she was very much wanting to do before the MRI.   

Overall Ellie is doing much better than when I last saw her, she is able to hold a conversation (until she becomes too tired).  A student volunteer was reading to Ellie earlier today and was having trouble saying one of Ellie's words.  Ellie very quietly and sincerely told her, "Don't worry, you will never be in trouble with me."  Oh man was it so sweet, so typical Ellie.

The blizzard that stopped Wisconsin

We had such a blizzard today that the entire state of Wisconsin shut down.  I mean I would expect something like that from a state like Tennessee, but when Wisconsin shuts down, you know it is one ferocious storm!!  So today while Ellie is in surgery, Ben & I were hunkered down at home.  Ben is not feeling very well today, probably partially exhaustion from the crazy hours we have been keeping this week and a wee bit of a cough.  He was asking me to lay in bed and read with him several times throughout the day and now at 4:51pm, he is already asleep. 

I realized that shoveling was going to be quite a feat for me with Ben feeling under the weather.  Typically we just take him out with us and he "helps" shovel or builds something or throws snowballs.  I called my neighbor, Chris, to see if she could turn me on to a neighbor kid who would do it for me, at this point I was willing to pay the big bucks to have it done, as it did not look as if anyone could actually get to our door anymore.  When I explained what was happening today with Ellie my neighbor and her partner, Kathy came over and snowblowed (is that what you say?) our driveway and front sidewalk PLUS shoveled out our car.   Not only that but when the snow started pile up again later on in the day, Chris came back for additional shoveling.  What a load off my mind!  Thank you so much Chris & Kathy for your assistance today, I don't even know how to begin to thank you!   

I still haven't heard an update from Thom yet.  That is what makes being at home harder, not having the minute-to-minute updates and actually being able to see how she is doing with my own eyes (I am afterall, from the "show me state").  Maybe he'll comment on this blog and then I'll know....

What would "worse" look like?

Our endocrinologist, Dr. Bekx stopped by yesterday to check in with us.  During her visiting Ellie went into a seizure while she was hooked up to an EEG machine.  The EEG tech was most excited as rarely is he able to actually capture a seizure happening on the EEG.  When she started going into the seizure, her respiration rate started to fall (she shouldn't fall below 90 and it was quickly plummeting from the 90s to the 60s to the 40s!!)  I went into full panic mode, hit the nurse's call button and no one responded.  I ran out into the hallway yelling, "She's having a seizure!!!"  (If I don't panic, who will, we are after all in a hospital.)  As Dr. Bekx cooly and calmly said, "Let's get some oxygen hooked up for her.  Several nurses ran into the room to help with the set-up, Ellie started to come back around. 

For the rest of the day she was never quite back to being able to speak or sit up or move around much.  She pretty much laid in bed.  I could tell she really really wanted to speak and the strange thing is when she can't speak, suddenly the words she wants to say "jump" into my head so I can speak for her.  It reminds me of how the Aboriginal people are able to speak to each other by reading one another's minds.  Or maybe it's just because I know her so well and know what she likes to talk about.  (I think the first description is more magical, though).  Either way, it's a helpful skill to have in these situation for sure.   

Last night we became concerned because Ellie really hadn't bounced back from her seizure.  The neuro resident came by to check on Ellie and he felt confident that she was reacting sluggishly because of the anti-seizure meds we had administered.   When he suggested we contact him if Ellie got worse, Thom asked what exactly would getting worse look like?  She was lying in bed drooling, not able to speak, barely moving.  Her oxygen levels had started to drop so we'd put her back on oxygen.  Then throughout the night her respiration rate kept dropping causing the alarm to continually go off. 

In the morning, an MRI revealed that only part of her brain was being drained by the shunt.  Ellie was rushed into surgery and she will either have the shunt relocated (again) or have a "Y" shaped shunt placed.  Either way it seems like it has to get better than it was yesterday.  (This is where you respond, "Oh yeah, definitely gotta get better.")

I demand my money back!!

After a not very restful night, Ben & I arrived back at the hospital around 10am.  I had waited for Thom to call me so that I would not disturb them should he or Ellie be asleep.  I think he did not want to call me for fear that I might still be asleep.  I was anxious to see how she was doing.  When we arrived, she was sleeping.  As I started performing my normal hospital routine of putting things away, Ellie began to stir.  Her eyes opened and she looked at me.  Oh how happy I was to see those bright brown eyes starring back at me.  But she wasn't saying anything.  I could tell she wanted to, but she somehow just couldn't.  Medical professionals kept coming in and asking me questions, "Has she urinated yet?"  To which I had no reply as Ben had dragged Thom off to the playroom before I could ask these essential questions.  Thus, I steered everyone to the playroom for any questions about the evening shift.  Dr. Hsu (neurologist) came in with a roomful of medical students/residents to discuss Ellie's case.  Ellie lay motionless on the bed, barely able to turn her head to the left side to look at me while having occasional jerking in her arms and chests (clonic movements apparently).  I was a bit panicked, feeling as if Ellie talking in a slurred mumbled way was so much better than not being able to talk at all for crying out loud.  Was I going to have to demand my money back??  Almost immediately after Dr. Hsu and crew left, Ellie began to talk with me.  Here's what she kept saying, "I don't need to go."  "Really I don't need to go."  "I don't need to go."  It was like her brain was stuck on letting us know that she did not need to go to the bathroom.  Or maybe when she could not talk that was what she so desperately wanted to say.  OK, I thought repeating the same thing over and over is better than not talking at all.   By the time Thom & Ben returned from the playroom, Ellie was much more herself, coming up with silly things to say.  Thom was amazed at how much she had progressed in the short amount of time he had been gone.  I guess she just needed a little mommy magic (ha!)

It was around lunchtime so I suggested I go get a bite to eat with Ben before Thom & Ben left for the day.  As I said this, Ellie suddenly insisted that she be able to eat something too.  Something she has not been interested in doing for awhile.  When we brought the muffin back to her room, her monitor started going crazy beeping because her heart rate and resperation went up so fast.  She gobbled down that muffin.

Now Ellie is resting peacefully in bed, not asleep but not energetic enough to really do much but lay and stare.  Funny how after seeing her so much worse yesterday, even that I am even grateful for that.

My best advice to you is to avoid the ER when at all possible...

I am ashamed to admit, I have been dwelling in a deep dark hole of despair for the past couple of months.  Ellie has not being doing well.  Drooling, mumbling, not sleeping well, sleeping too much, difficulty walking, stumbling, continually feeling as if she is falling.  And through it all not complaining one iota (well only if Ben does something she does not approve of).  And me feeling as if each and every day she was slipping a bit away.  Thinking frequently of how in the world I would survive without this angel who has inhabited my life for the past almost ten years.

Last Thursday Ellie's school nurse (have I said how much I adore her?)  Many days Ellie tells me that the favorite part of her school day is going to visit Stephanie the nurse and I can totally see why.  She is just so friendly and compassionate and smart and funny and you just feel like in some way on your side rooting for you.  But I digress, she called to tell me that Ellie seemed as if she was displaying some signs of hydrocephalous (too much cerebral spinal fluid trapped in the brain.)  I told her that I had noticed the same symptoms increasing as of late.  When we picked Ellie up from school, her teacher,  Ms. Pettit whom I also adore because I feel like she really empathizes with being a parent and really bonds with Ellie and she is oh-so-friendly, I could just tit tat (talk + chit chat) with her for hours.  Anyway, she let me know that Ellie wasn't doing so well but seemed to revive after a nap.  We decided to go to a sleep doctor to see if the symptoms would be resolved with more sleep.

On Friday the sleep clinic called with an opening and we jumped at the opportunity.  Well, then Saturday Ellie slept almost the entire day, we thought OMG, that sleep clinic is so effective and FAST!!  WOW!!  We hadn't even started in sleep medications, we were only collecting data.  By Sunday she seemed to be doing better, but was having some difficulty staying vertical, she seemed to keep falling over.  If I asked her to put on her shoes, she would start and then forget what the heck baby fire she was doing.

Somehow, some way we decided to take her to school this morning.  Soon after drop-off, Jo from the nurse's office called to say it looked as if Ellie were having multiple seizures.  Thom raced to pick her up and take her to the ER while Ben and I readied ourselves to meet up with them.

Thom & Ellie arrived in the ER at maybe 9am at the latest.  Ben & I arrived at 9:45am. Thom told me that they were trying to read her temperature and it was coming up at 93 or 94 degrees, so they kept trying different thermometers.  When I suggested to the nurse that her temperature had in fact been that low in the past when she was unable to regulate her body temperature, the nurse asked me (somewhat snottily) if I wanted them to check it rectally to see if that was an accurate reading.  What I thought was, "No, I don't think any of us would be friends after something like that."  What I said, was "Oh, ah, uuu, no I don't think so."

Then a more pleasant medical student arrived to fill me in on the game plan.  She told me they wanted to run labs to check her electrolytes (makes total sense because Ellie's sodium has been wonky the last few months).  Then she told me they wanted to check for a urinary tract infection.  I musta looked at her as if she'd grown a second head.  I was thinking, "All the symptoms I've given you, all the past history you've read on my child and THIS is what you want to check into??  REALLY???  SERIOUSLY??"  Noticing my incredulity, she mentioned that they were also wanting to do an MRI, sort of as an afterthought.

Finally finally we did go up for the MRI.

Then we waited and waited and waited.  While I watched High School Musical 2 (Go Wildcats!), Ellie continued to sleep.  She would occasionally awaken to tell me in her soft and slurred voice how sad she felt to be in the hospital.  Possibly because the whole urinary tract infection thing was not panning out, one nurse told Ellie that she would probably be going home today.  I was flabbergasted.  I could not imagine how we could function with Ellie barely able to walk, talk or even stay awake at that point.  Occasionally, we would hear a young child wailing and I was struck by memories of how challenging it is having a toddler in the ER because everything but everything is terrifying.  We kept throwing that little guy huggle snuggles in hopes that he would feel better.   After one such throw, he actually did stop crying and I was adamant that Ellie's snuggle had done the trick.

At around 2pm, I started losing my energy and my patience and decided that  a Green Tea Latte was just the thing to revive me.  (Oh yummy green tea latte, how I love you so!!!)  Ben and I ventured to the local Starbucks with a drive thru, intending to utilize that drive thru service.  Instead, Ben wanted to go in to have a cup of water.   And really what else did we have to do but wait at this point, waiting at Starbuck's certainly seemed preferable to continuing to wait at the ER where I could become a little cranky.  (I have a rule about being as nice as I possibly can to people who have access to my daughter's veins and brain...)  While we were in Starbuck's I was once again struck by that surreal feeling of all these people are just living their lives, they don't even know my daughter is in the ER and I feel as if she is slipping away...It was strange (one of Ellie's favorite words).

Finally at around 4pm, the incredibly talented Dr. Iskandar arrived (luckily NOT while I was indulging in HSM 2) and he said that the shunt was not working and we needed to replace it.  Based on her current symptoms, did I think that we should do it tonight or wait until tomorrow at 1pm?  I felt incredibly underqualified to answer that question.  It seemed too big to answer, what if I picked wrong?  Yikes!

Somehow, it was a great relief to know that there was something that we could do to help her feel better.  There are times when surgery and hospitalization do not feel like the worst possible choice.  At times, it is a relief to have a team (even a medical one or maybe especially a medical one) working with you towards the same goal--Ellie feeling better.

We decided to wait until tomorrow at 1pm, and we were moved to a room on the floor (wherever Dr. Iskandar is in that hospital, things begin to happen.)

As Ellie continued to sleep and become more unresponsive throughout the evening, our nurse, Suzy (our favorite on the pediatric unit) became concerned and called Neurosurgery.  At the same time, I ran into our oncologist, Dr. Puccetti, speaking on the phone with our neurologist, Dr. Hsu (prounounced shoe).   Dr. Puccetti got off the phone and came to our room, when she saw that Ellie was not responding (or "ponding" as Ben would say), she immediately started calling Dr. Iskandar herself to get things moving along.  Ellie was quickly moved to surgery and that is where she is right now as I type this blog.  Again, you can see how so many many dramas are set in hospitals can't you?

Thom just called as I was editing to say Ellie was being moved to recovery and that Dr. Iskandar had placed another shunt through her brain that hopefully would function better than the previous one.  So now she has 2 shunts--one working and one just for decorations (Ellie will like that explanation).

Radio Celebrity

I know, I know first an audience member of Oprah, now interviewed on the radio all within a few months of each other!  What could possibly be next?  How lucky am I??

[caption id="attachment_2267" align="alignleft" width="225" caption="Ellie awaiting the limo to Queens, THAT is how you get to Sesame Street!!"][/caption]

On Friday,  I volunteered at a radio-a-thon called "Connie and Fish for Make-A-Wish" (www.connieandfish.com).  It was fanfreakintastic!!  I was super nervous because the first thing that was going to happen was I was going to be on the air talking about Ellie's wish.  When Make-A-Wish of Wisconsin sent out some sample questions, I felt a bit teary eyed just looking at them and remembering how magical our wish was.   In the letter, the foundation said that many wish families worried about getting emotional on the air, but they reassured us that getting emotional was fine, because over the radio, no one could see our facial expressions.  Thus, I concluded, becoming emotional was not a problem and might even deliver the message more powerfully.  Well, then they picked the right woman for that job!!  I can DO emotional (ask anyone in my coaching group).  I couldn't sleep well the night before wondering about the interview, pondering whether or not it would be better to send Thom than have to face this sudden onslaught of nerves.  I was worried that in my nervousness I would forget what I was going to say, go blank, or become a bumbling 15-year-old using the words, "like and you know"

[caption id="attachment_2252" align="alignright" width="225" caption="Knocking at 123 Sesame Street (Make-A-Wish trip)."][/caption]

after every thought.  But the more I thought about it the more I realized that I was THE one to tell the story, I knew that they would not get as much information from Thom as they would from me.  When I arrived I was set up at the phone bank (8 phones, 3 computer data entry stations), the coordinator instructed me on how to answer the phones.   I was so nervous by this point that I felt all sweaty and butterfly-ish as if at any moment I might just decide to black out.  Everyone was introducing themselves to me to which I responded by saying that I would most likely not recall any of the information given until after the interview.   My brain was basically on overload.

Finally, I was called to come for the interview and I nervously walked down the hall and sat in a radio booth with Connie & Fish.  I was told to put on a set of earphones and a microphone was pushed way up to my face.  Then it began and man-oh-man it was so much easier than I ever anticipated.  It was like sitting and chatting with some new friends, telling them about something I adore talking about--our wish.  I was amazed when it was over, there was so much more I had intended to say about Ellie's wish and how important it has been in our lives.  I talked about the importance of the wish on our family being able to spend time together (probably the most important aspect to Ellie and maybe

[caption id="attachment_2257" align="alignleft" width="300" caption="Ben hailing the subway train."][/caption]

Ben.  Well, for Ben at the time it might have been the subway train ride...)  I talked about how every time we have been in the hospital since the trip, we have taken our scrapbook and shared it with the nurses and doctors, how it has continually given us something else to focus on during the challenge of hospital stays.

The first call I took (pre-interview, when I was super nervous) was from the grandpa of one of the wish kids who had just been on the radio.  He was listening over the internet (who knew??) and wanted to make a contribution.  One newly divorced single mother called in and told me how she and her sons had been

[caption id="attachment_2253" align="alignright" width="300" caption="Oscar did not in fact tell us to "scram" as we anticipated."][/caption]

listening to the show.  When she told her sons that she wasn't sure how she was going to pay the mortgage, so she did not think it would be possible to make a donation, her sons went upstairs and emptied their piggy banks, coming up with $10.

A family

[caption id="attachment_2256" align="alignleft" width="300" caption="Sitting at the counter ordering up a drink (just pretend silly!)"][/caption]

came in and their son had made his transition but they were thrilled to talk about their wish trip.  Another mom came in and was gladly showing us pictures of their wish trip to Disney World, a beautiful scrapbook of their time together.  She had 2 children with her and one on the way, but the little girl in the scrapbook wasn't there.  At first, I thought, "Where is the beautiful smiling girl in the pictures?"  And then it hit me.she too had passed.  What astounded me was how these families had the courage to come and talk about this wonderful amazing memory that they had made with their family, in the hopes that more families could experience that wonderfulness.  In a way, it seemed a relief to be able to talk about something so happy, so touching, so memorable without everyone around them getting freaked out or sad.

[caption id="attachment_2260" align="alignright" width="300" caption="That Rosita was determined to teach Ellie a Spanish word."][/caption]

One mom who was interviewed after me came in wanting to talk with me because our stories were so similar.   Her 6-year-old son had made a wish to sing the national anthem at a Brewer's game (apparently this is on youtube, if any one knows the address will you send it to me? Then I will post it here).

I have volunteered recently for Capital Candlelighters, an organization geared at helping families with children experiencing cancer.  When I have been to Capital Candlelighters events everyone is talking about cancer and cancer treatment.  For some people, this type of community is essential to their wellbeing and ability to overcome the hardships unique to a child with cancer.  The thing I truly appreciate about Make-A-Wish when I go to one of their functions is that rarely does anyone talk about disease or illness.  Instead, the conversations are about dreams that are about to come true or happy memories of a magical time together.  Creating hope.  For me, the latter feels so much better than the former because so much of the time I feel as if Brain Tumor is the background music of my life, talking about it does not often feel uplifting to me.  When the current season of Brothers & Sisters had a main character develop cancer, I quit watching, I figured, I already have that dramatic cancer channel on at home, I don't have to watch it on television!

[caption id="attachment_2254" align="alignleft" width="300" caption="Sitting on the steps of 123 with mom, dad AND grandparents."][/caption]

I have to say that yesterday was one of the most awe-inspiring, touching, moving, emotional, fun with a purpose kind of afternoons I have ever had.  The energy and camaraderie in the room was wonderful, we were all working together as a team to make this happen.  The staff was magnificent, both organized and friendly, immediately making me feel welcome and an essential part of what was happening.  The fun was only enhanced by the way I was treated, like a celebrity, not only for being on the radio and telling my story but for being a Wish mom and a Wishgranter and a volunteer at the radio-a-thon.  My thought, was "Of course I would want to do as much as I possibly can for this amazing organization.  Who wouldn't want to make some one's wish come true??  (Here's where Ellie would say, Oscar the Grouch wouldn't.)"  Honestly, though, feeling appreciated for doing these things that I loved felt awesome too.

[caption id="attachment_2269" align="alignright" width="202" caption="Ellie in our sweet hotel suite in Times Square!"][/caption]

The excitement built at the end of the day as the radio-a-thon was ending.  I would put down my phone and it would immediately start ringing again.  I was getting "phone neck" and hand cramps, but I had to race ahead and get those pledges that were coming in.  The phone kept on ringing even after the 6pm deadline.  I took one call from a volunteer who works in the Make-A-Wish office every single week who gave $1000.  I had to give her a big ol' "WHOOO HOOO!!"  for that one.  All together, the radio-a-thon raised over $200,000.  Here's a great big bunch of gratitude for all of the wonderful people who pulled together to make that many more wishes come true, what an honor to be a part of that.

A valuable lesson

[caption id="attachment_2247" align="alignleft" width="300" caption="Ben gets clean many many times a day."][/caption]

A few days ago, Ben came to me, with a large red mark on that skin in between his nose and mouth.  He told me quite seriously, "I just learned a valuable lesson.  Never put a clippy on your lip."  He had taken one of the clothes pins we use for chip bags and he tried putting it on his lip, when he learned this valuable lesson.  I love that he is looking at things as lessons rather than as mistakes. 

Earlier in the weekend, we learned a valuable lessone about leaving wooden candle holders unattended.  Only a smallish fire that was easy to control.   I do not think my children have seen me move that fast maybe ever.

Miracle cures

Last week, both my children experienced colds--big time.  Ellie felt the worst on Monday, felt better Tuesday but then woke up Wednesday with laryngitis.  Thursday morning, Ellie still was whispering to me, but  seemed to be feeling a bit better energy-wise.  Thom and I debated whether or not to send her to school.  Now when I was a youngster, we went to school unless we were lying on death's doorstep.  If you could become verticle, you were on that bus heading towards school.  With all of the flus and what-not these days, there are all kinds of rules about when to have your child go back to school and when to keep them home to try to decrease spreading infection.  On Thursday afternoon, Stephanie, Ellie's school nurse called to see how Ellie was doing.  I explained the situation and how bad she still sounded, how she wasn't speaking.  When suddenly, Ellie yells down the stairs (for the first time in two days!!) "WHO ARE YOU TALKING TO ON THE PHONE??"  So shocked was I that I ran to the furthest point in the house away from the stairs.  I felt like I was "busted", as if we had been playing hookie and not even realized it.  I felt as if I had just made up the whole thing up, did Ellie really have a sore throat in the morning or had I made that up? 

An alternate ending:  When I shared this story with Cynthia, she  thought it would have been even better had I said to the nurse, "WOW!!  You just healed her!  And over the phone!  You are some GREAT nurse!!"

Entertainment brought to you by our local Blockbuster

[caption id="attachment_2227" align="alignleft" width="300" caption="Ellie when we first moved to Madison at 4 years old."][/caption]

Often on the weekends, Ellie and I will walk to our local blockbuster store, which according to our pedometer is 2.44 miles round trip.  When we arrived at Blockbuster recently, Ellie asked me if she could walk around.  I said, "Sure" as we were the only ones in the store so I knew she wouldn't get lost in the crowd.  Well, at one point, I looked up from my browsing to see Ellie walking quickly through the store.  I thought perhaps she was looking for me.  So I hollered, "Ellie, I am over here!"  Ellie responded that she knew and continued on her brisk walk.  You see when I heard her say, "walk around the store", I immediately thought she meant, "browsing" the children's movie section.  What Ellie meant was literally "walk around the store" which is exactly what she was doing. 

Last weekend Ellie and I again went on a walking date to our local blockbuster to exchange movies.  While we were there, Ellie attempted to converse with the woman behind the counter.  When Ellie tried to tell the woman some of her words and ideas, the woman immediately told Ellie that her words were in fact not "real" words, they were only her own made up words.  Geez Louise, I thought to myself, do you also like to tell children there is no Santa Claus?  Straighten them out on the tooth fairy too.  Who needs all that meddlesome creativity and imagination anyway?  And I wondered if perhaps we should switch to Netflix.  Seriously, making up words is one of Ellie's greatest joys in life and I get it that not everyone appreciates that but for crying out loud I did not think she needed to be "fixed" of this at Blockbuster.  (As you can tell, I am still peeved about the incident, which is pretty silly seeing as how Ellie took no offense in the first place and does not recall talking to this woman in the second.) 

Well last weekend I mustered up my courage and we took our trek to Blockbuster and encountered another Blockbuster employee behind the counter.  Ellie asked what her name was and immediately wanted to tell the woman how she changed her name to rhyme with her good friend Kelly.  The woman listened patiently, then she told Ellie how when she was growing up she had friends and they too wanted their names to rhyme.  She totally got the story, but more importantly she TRIED to get the story and relate it to what Ellie was saying.   It did not take any longer than crushing a little girl's dream, and we all left happier for the encounter.  Boy oh boy do I prefer friendly and I have gotten particularly used to friendly living in Madison for 5 years now.

Peanut peanut butter

Shelly is the one and only friend that I still have from high school AND college.  Amazing.  (I would call her my "oldest" friend, but when I called another friend "old" she requested that I not use that word in conjunction with her name.  Thus I have learned from Debbie Martin not to use the word "oldest friend" as it has a double meaning that may not be flattering to the friend in question).  The first memory that popped into my mind was Shelly's mom who passed away recently (is it recently or is it years now?), how when I decided I was not a meat eater, she was convinced that I just had not been eating the good meats that were out there.  She would say to me, "But this is REALLY good sausage."  Her mother was determined to be the one to turn me back onto meat, I appreciated her attempts to feed me. 

In college, Shel and I roomed together our freshman year and shared our love of Hall & Oats, peanut butter, and many trips to the local TCBY (for what else but peanut butter yogurt). 

Shelly now lives in St. Louis with her husband and 3 beautiful daughters.  I love watching Shelly with her daughters because one or all three of them are constantly touching her or crawling on top of her or sitting on her lap or holding her hands.  It's like they just cannot get enough of her.  The time before our last visit, Ellie wanted to read a book and Shelly immediately sat down with Ellie and her 3 girls and began to read.  When we visit, Shelly always has a spread like you wouldn't believe, carrying on her mother's tradition of feeding me (or at least attempting to).  I would say, Shelly and Jeff are some of the finest hosts that I know.   When you are in their home it just seems as if they are truly happy to have you.  Because of this, every time we are in the St. Louis area we make plans to see them.  During one visit,  I started eating this wonderful quiche, I just could not get enough of it, so yummy was it.  When I asked about it, the whole room got quiet while Jeff & Shel sort of had a quizzical look on their faces.  Then, as comprehension appeared on Shelly's face, she said, "Oh you mean the DIP?"  Oops.  Then, of course, I had to go back and try it as a dip. 

When we went to visit them last summer, it was fanfreakintastic.  Shelly allowed Ellie (hey they even rhyme!) to follow her around the house while she prepared a SPREAD (even though I made the visit at a time when she would not feel obligated to cook for us!)  Shelly prepared the infamous dip that I had so enjoyed the previous time and her daughter, Anna, recalled that Ellie loved chips.  Then once she had everything prepared, Ellie sat down beside Shelly and we all sat around and chit chatted while the rest of the kids sat on the floor and played.  It was unbelievably amazing because so many times Ellie gets lost if there is a crowd of people, feeling as if she is excluded.  But in this situation, somehow, magically we all felt included and loved.  It was spectacular.  I mean before this incident it barely felt possible that there would be a situation where we could actually sit with another family and have an enjoyable conversation, one where I did not feel as if I constantly needed to assist Ellie in taking turns or assist her in feeling included or figure out when there was a pause so she might share her story.  It was like a breath of fresh air to be able to just sit back and relax and connect with the people around us while Ellie was also feeling connected and loved.  So often in these situations I can see the person Ellie is talking with begin to lose interest in talking with her.  Shelly never got to that point, she just stayed connected the whole time.  We ended up staying much longer than I ever anticipated because it was just so magically delicious.  My hope is that some day I will make guests in my home feel as loved and welcome as Shelly did last July.

Happy Birthday, Shel, we are all so happy that you and your family are in our lives!

And now we return to yet another library story...

[caption id="attachment_2207" align="alignright" width="300" caption="Ellie and I not at the library."][/caption]

I know what you are thinking, "For crying out loud!  What could have possibly happened at the library THIS time??"  More plants knocked down?  Another hurt child?  Ruined books?  What could it be??"  (See "Another Not So Pretty Do-Over Story")

As you may or may not know I have been challenged for many years with a librarian phobia.  (I may be repeating myself here, if I am, feel free to skim this part, I'll never know the differance.)  It all started in college when I worked at a library one summer and one of the librarians would follow me around as I worked correcting my many mistakes.  Until finally I could not take it anymore and quit.  Then in La Grange one of the librarians asked Ellie if she "had something wrong with her" when she got upset to which, I responded by sending a highly charged e-mail.  I mean seriously, would you ever ask that of an adult patron?  Surprisingly, the next time we came to the library this same librarian was ultra nice to us.  That kind of nice where there is an "I'm sorry" planted inside.  Weird huh?  Oh and then there was another time that Ellie threw up at the library and Jenny and I tried to see if we could get some help cleaning it up to no avail.  Well, it seems that the tide has turned my friends.  In a HUGE way.  Here are my examples.

[caption id="attachment_2208" align="alignleft" width="300" caption="Love of books started early for Ellie. Beginning when she would not crawl on all fours b/c she could not hold books unless she sat and scooted instead."][/caption]

It all began at the Madison Main Branch when Ellie & I were checking out (Ben was holding the gate open for library patrons) and Ellie began to tell the librarian how much we love books and how much we love the library.  The two librarians checking us out were thrilled.  They told Ellie that they wished they had a television camera so they could make a commercial out of her comments.  HELLO.  I cannot tell you how many many times in the past Ellie has said this to a librarian only to either be ignored or responded to with a noncommittal, "Hmm."  Discouraging any further discussion.

[caption id="attachment_2211" align="alignright" width="300" caption="More books to love..."][/caption]

But wait, there's MORE.  At our local library, recently, Ellie & I arrived at the front desk.  Ellie told the librarian checking us out that we likove (like + love) the library.  To which the librarian, laughing, told Ellie that they loved us for loving the library.   About knocked me over.

Finally, again at our local branch, one day Ellie began to tell the librarian how she likoved to make up words.  To which the librarian responded by saying how he loved words and any time she wanted to teach him new words he would be happy to learn them.  And on a subsequent visit, this same librarian told Ben how

[caption id="attachment_2212" align="alignright" width="300" caption="More reading in bed..."][/caption]

much he too loved dinosaurs when he was growing up.  Chatty and friendly at the LIBRARY??  It is totally blowing my mind, this complete turn of events.  It seems that we have arrived into a parallel universe where librarians are in fact friendly and helpful.  Seriously.  Now if everyone would start singing and dancing, like that scene in Music Man at the library (Marian the Librarian) this would in fact be the perfect world I've dreamed of.  That and maybe pink fancy cupcakes to replenish ourselves after all the dancing and singing.

Oprah!

My brother Kip is a HUGE Oprah fan, he records the show every day.  When I told him that I was invited to be in the audience by my super friend Betsy C.  he was dumbfounded.  He has tried for years and years to get tickets to no avail.  And I mean for crying out loud he works in the movie biz, how did I get tickets first?  When I explained the dress I was going to wear to him, he paused.  One of those pregnant pauses where you can feel the other person thinking, "Oh NO, you are NOT going to wear THAT?"  But instead of feeling like the dress was not the appropriate choice, instead I thought, I just didn't explain the dress correctly because this dress is perfect.  It would be what Oprah would want.  For sure.   

One of the things I was most excited about was having the opportunity to hang out with Betsy for the afternoon something that happens far less than I would like.  It was also amazing how the few days before the event, everything just rolled right off me.  Anything that on another day might have caused me to go into "Oh boy, I've really messed up.  I'm a bad mom."  Made me think instead, "I'm going to OPRAH!!"  It was an outstanding feeling not to take things so personally, but to instead just know that all was well and would indeed work itself out whether I felt bad about it or felt good about something else.  And it was fabulous to have something other than medical things to phone about. 

We discovered that being in the Oprah audience is a whole lot like being an extra in a movie--a LOT of waiting around.  You are herded from one line to the next and then into a large waiting area.  It is really really well organized and the staff, for the most part, was friendly and helpful.  As we were waiting in our first line, it sort of felt like entering another country.  The whole experience was enhanced by the airport like security,  we went through the metal detectors and had our bags searched.  Then we waited and waited and waited in the upstairs waiting area that had lots of HUGE pictures of Oprah with various guests.  We had no idea how long we waited because our phones had been confiscated and who wears a watch anymore? (No offense if you are in fact wearing a watch right now.)  I started out wearing my Tiara from my coaching program because I really felt like Oprah would get the whole Tiara thing.  Some of the security guards really liked it and would call me "your highness" as they ushered us through.  I sorta lost my nerve after I signed a waiver saying that I would not be advertising anything on the show.  I liked my sister's response to the whole thing, "You wore it at the perfect time."  Loved the feeling of confidence that statement made. 

Finally, they started calling the people to sit in the front rows (guests and guests of the guests plus some special audience members.) 
We were number 274, so we were the last group to be seated.  One of the most exciting parts was moving from the waiting area to this dimly lighted hallway to the studio, that was when the excitement was really building for me.  Then suddenly we were there and looking for seats.  A woman came out and interacted with the audience for maybe a good half hour, finding out who was there with their moms, who had an anniversary, etc.  The other thing that I liked the most was the feeling of the audience, it was like everyone was cheering and excited for everyone else there.  The energy and excitement in the room was palpable.  Then, the camera people started moving around and suddenly it was time for Oprah to make her appearance.  The thing Betsy & I noticed was how she walked out, just like a woman ready to do her job.  Of course the entire audience stood when she came out and clapped.  Oprah immediately said "I love you all that much too, I really do."  And you really believed her, feeling the love in the room.  She did seem shorter than I expected and it seemed like she was having a really hard time walking in her extremely high heels.  The set up on stage was a table with high backed chairs.  The stage actually rose once Oprah sat down.  Everything felt much more orchestrated than when watching it at home.  Oprah came read the prompts, showed a video, had a couple of different guests join her on stage.  At the end of the taping Oprah wanted to re-do the ending because she wanted one of the guests to be in the closing shots.  Apparently one of the crew did not want to re-shoot it and Oprah told him (and the audience) you know it is the name "Oprah" on the show so  let's do it again.  Yes it was a bit snotty, but what I liked about it was that it was REAL, she was having a moment of frustration with a co-worker like all of us do.  Then we re-did one other segment where her mic was covered by a book (that we received called Half the Sky).  Then it was over and we went back outta Oprah land into Chicagoland. 

 The show will be aired on OCTOBER 1.  I do not think you will see me in the audience, but it was a terrific topic nonetheless.

Perfection

[caption id="attachment_2185" align="alignleft" width="300" caption="Yet another funny face Ben photo, taken by none other than Ben himself."][/caption]

Friday was another bright blue skies, warm autumn afternoon.  As we began to walk Ellie home from school, Ben stated that he wanted to walk right beside his "best sister".  He even wanted to hold her hand.  When Ellie protested the hand-holding, Ben insisted that they do so when crossing the street.  Ellie kept sighing and uttering, "He is so adorable!"  Ben made great effort to walk right beside Ellie, stopping when she stopped to sing a little song.  Then continuing at a slower pace than his usual jog/run home, even inventing a special step that would keep him in line with his best sister.  (He sort of made his legs look like a horse to do so.) And, of course, I was his best mommy and Thom was, you guessed it, his best daddy.  It was one of those parenting moments where I felt the total love and appreciation for my children and who they have become and simultaneously felt all the years of wanting my children to understand and love one another come to fruition.  I just wanted to bottle the moment up and carry it with me always.  Amazing it was.   Utter perfection.

St. Vinny's

[caption id="attachment_2173" align="alignleft" width="300" caption="How fabulappy (fabulous + happy) I am to go to St. Vinny's (earrings are in fact a purchase from the aforementioned store.)"][/caption]

Another one of my favorite neighborhood haunts is, of course, the legendary St. Vincent De Paul Thrift Store.  Many of you are quite familiar with this store, as I will use any excuse to peruse possible, including but not limited to, a bike sale (purchased a radio flyer bicycle w/ training wheels for $5) an end of season sale, a visiting guest who needs a book, sweatshirt, new wardrobe...When I walk into a thrift store I have that sudden rush of feeling that I can have anything in the store.  I feel like waving a 20 around and announcing, "I'll take it all!"  Ben has begun to enjoy this feeling and asks quite often for a visit to St. Vinny's for a look at their toy aisle (he is allowed to spend a whopping dollar and usually ends up w/ several toys for that amount.)  My favorite spot, besides the magnificent, well-organized and

[caption id="attachment_2180" align="alignright" width="225" caption="How fabulappy Ben feels when he gets himself a dollars worth of toys."][/caption]

extremely reasonably priced books, is the $1 rack.  I have found so many spectacular tops, crazy pants, skirts on this rack.   That's not even to mention the earrings for $2-4.  I love it when I find a person who is just as excited about me finding something there at the dollar rack (you know who you are.)  I am in fact the person that Ellen Degeneres joked about one day on her show that some people actually brag about how cheap their clothes are rather than how expensive.  That's me.  Cheap bragger.

Last week (or was it the week before?)  Ben & I were perusing the store.  When we went to check out, the female checker (Ben & Ellie's favorite kind of checker) looked disappointed.  She inquired if Ellie was at school.  I said that yes she was.  It sort of

[caption id="attachment_2177" align="alignleft" width="300" caption="How namused (not + amused) Ellie feels to find herself in St. Vinny's with 2 browsers (the opposite of a fast shopper such as herself)."][/caption]

caught me off guard as I always feel somewhat invisible in the store.  The attempts I have made to hold conversations with some of the employees have been unsuccessful, simply eliciting a mumbled "huh" to get me to NOT share any more information with the person.  Of course not all the employees are like this, but I suppose those are the ones that have left me feeling somewhat invisible and less chatty during check-outs.  But I digress.  The checker then went on to say how impressed she was with how polite Ellie is, always saying her "pleases and thank yous and your welcomes."  She said this was quite a contrast to some of the other

[caption id="attachment_2175" align="alignright" width="300" caption="How fabulappy Thom is when we save money!"][/caption]

young customers she sees (fortunately, she did not look pointedly at our Ben!)  It was quite a boost to have such high praise for sweet Ellie in an environment where I don't often think anyone there will remember us.  And it was quite a shock too because I had just written my "tolerating" blogs and here was yet another person in the position of appreciating all of the wonderful things about Ellie.

Say what you need to say

[caption id="attachment_2167" align="alignleft" width="300" caption="Hats on, ready for a walk! Taken by our family photographer, Ben."][/caption]

There is this crosswalk that we take every day to school.  Last year, when we were trying to traverse this intersection, it became apparent to me that the traffic signal was off.  As we had a walk sign, it seemed that there was a green right arrow because cars just kept whipping around the corner.  You can imagine how terrifying it was with a 3 and 8 year old trying to zoom across amidst that kind of traffic.  After it occurred, I called Thom.  Thom quickly called the city from the safety of his cubicle and asked them to change the signal.  And they did right away.  Now when we push the walk sign, every car has a red.  Yeah! 

Recently, we were walking home from school and had made it to the intersection.  Well, right as we were crossing the intersection, this pick-up started turning left.  Practically running right into Ben.  Before I could stop myself, I yelled, "YOU HAVE GOT TO BE KIDDING ME!!!"  Pretty harsh, eh? Now this may not seem like a big step, but usually I think of a comeback many hours after an event has occurred, as I am stewing over it.  Obviously, we made it safely to the other side.  As the light changed, I noticed a car trying to turn right, the driver seemed afraid to turn, lest I turn some of of my venomous wrath onto him.  Knowing that we would take awhile to cross, I insisted he go ahead and turn before we start.  It was sort of empowering actually saying what I wanted to say when it happened and seeing others in our environment responding.

Tolerating Part II: What I REALLY want

[caption id="attachment_2160" align="alignleft" width="228" caption="Jennifer and her baby, Alex."][/caption]

When you know what you don't want, you more easily know what you DO.  I guess ultimately, I am wanting to be like my friend and book club leader, Jennifer.  Sometimes at book club, there will be tension between different members.  I can sense that there is some friction and I start feeling uneasy.    I start feeling uncomfortable as if I need to protect the member that isn't being appreciated.  Not Jennifer, she maintains her friendly demeanor and just continues to enjoy book club.  Even though she too can sense the tension, she just doesn't even go there, she simply allows everyone to be where they are and continues to spread her joy.  That is totally how I strive to be, even if someone is not appreciating Ellie, that I would merely continue on my merry way.  That I wouldn't end up feeling as if I have to explain or fix the situation in any way shape or form.  Because honestly, it is none

[caption id="attachment_2159" align="alignright" width="300" caption="Adorable baby Alex, the most agreeable baby ever."][/caption]

of my business what anyone thinks of Ellie.  And what anyone thinks of Ellie does not bother Ellie in the least.  Ellie just goes right on being herself, telling her stories regardless.  Like Jennifer, Ellie is so willing and able to allow others around her to be who they are AND where they are without taking any of it personally. 

The other piece of it is that when I see others interacting with Ellie in such a kind, connected, patient way it reminds me of how I want to be with her more often.  (By the way, Jennifer is most definitely one of the people that treat Ellie with warmth and humor and dignity and patience.  It is wonderful to witness her interacting with either one of my children.) It is way too easy to get caught up in daily chores/routines and just sort of ignore what Ellie is saying to me as she tells me the same story for the 50th time that day.  From witnessing my mom interact with Ellie I know that there is a way to come at these stories that makes them fresh and new each and every time.  All of these amazing people are like a gentle reminder, a post-it note recall, to get myself back on track.

Tolerating

[caption id="attachment_2147" align="alignright" width="300" caption="Ellie not at physical or occupational therapy"][/caption]

This summer we signed up for Physical Therapy and Occupational Therapy at a local hospital because our hospital was completely booked.  Every week we would traipse to both therapies on different days.  The thing that struck me was how the therapists who worked with Ellie really did not seem to have any connection with her whatsoever.  Not that they were unkind, they weren't.  They just didn't seem to "get" her like some people do.  Rather, they seemed to tolerate her.  I finally got to the point where I was tired of being tolerated and it was at the point where Ellie really didn't have enough energy to do much besides go to the therapies that I finally gathered my courage and bailed on the whole thing.

Then we went to register for school and we walked in and several people came up to Ellie just to say "hi".  Some others listened to Ellie as she explained Jabool (Joy + Button + school), and taught them many of her words.  It was phenomenal.  And I thought, "See this is what

[caption id="attachment_2149" align="alignleft" width="300" caption="We much prefer, Hug Therapy..."][/caption]

I'm talking about!"  At her school and at the hospital Ellie is treated like a super star.  People at these locations authentically enjoy interacting with Ellie and can see the many gifts she has to offer.

A week later, Ellie, Ben & I were at Willy Street Co-op when Ellie started having a seizure, it was small and she was able to come out of it on her own.  Then she had another one on our walk home.  For some reason, my response to Ellie having a seizure is to talk MORE LOUDLY to her.  Probably because once when she started going into a seizure a voice inside my head shouted, "NO YOU STAY HERE WITH ME!!!"  And suddenly she came out of it.  As if  that yelling inner voice really worked.  Weird, huh?  So maybe that is why more recently I have begun to actually talk more loudly when I see her

[caption id="attachment_2150" align="alignright" width="300" caption="Or swim therapy, perhaps?"][/caption]

disappearing into a seizure.  Anyway, we  (and by 'we", I mean Thom, aka Dr. Daddy) phoned our endocrinologist to tell her we wanted to get Ellie's sodium level checked (lowered or dropping sodium can cause a seizure), well the endocrinologist wanted us to go to the hospital immediately.  The whole point of this story is to say that we ended up going to the hospital.  As we departed the elevator, Tina, one of the child life workers we have known since Ellie was 4 years old was standing there.  Her face lit up when she saw Ellie and Ellie immediately began telling Tina of her latest word creations.  Tina and one of her colleagues listened intently, having a great time with all that Ellie had to share.  Before they left, Tina told her, "I could just listen to you all day!"  It was like they really GOT Ellie.  That is the BEST and how could I settle for being tolerated after that kind of treatment?  But I suppose the gift that comes out of feeling tolerated is true appreciation for those times when Ellie is not.

The same, but different

[caption id="attachment_2142" align="alignright" width="300" caption="Oh no! I cannot look, it is the dreaded EYE doctor!!!"][/caption]

My friend, CYNTHIA (I assured her that I would always announce if I was talking about her in my blog so she wouldn't feel paranoid every time I said the ambiguous, " my friend") was sharing with me recently how wonderful a recent  doctor's visit was with her daughter.   Cynthia was so impressed with the staff's ability to relate to her daughter, their equipment geared towards her understanding and the doctor's empathy and ability to listen.

It was to the eye doctor, Ellie's most dreaded doctor of all.  In all of our years of doctors visits, the one and only time she has actually run out of the room was at the eye doctor.  They had some machine that was supposed to appeal to children, but for Ellie it was startling and loud.  The woman performing that portion of the visit quickly became impatient w/ Ellie and left.  I recalled how one of the doctors wanted to try a new machine with Ellie to determine her visual capacity.  We came into the room and the doctor explained that he was going to put a gel on Ellie's head.  Ellie immediately began screaming at the top of her lungs, "NOOOOOO!" (For anyone who does not know, Ellie is extremely sensitive to the way things feel and has thrown up when I've tried to put lotion on her in the past.)  The doctor, quite taken aback, stammered, "I mean we are going to use this electormagnetic goobly gop (he used a much more eloquent word which I cannot now recall).  After much negotiation on his part and much screaming on Ellie's, the young doctor or resident finally acquiesced, saying, "I guess we won't be able to do this test today."  As soon as those words were uttered, we all immediately began gathering our belongings and heading for the door.   When the doctor realized his faux pas, he suddenly began to back pedal, "Well, maybe we could just try...."  But at that point it was too late.  I mean we hadn't high fived on the deal, but that deal was sealed.  I recalled how the eye doctor when she informed me that Ellie most likely does not have peripheral vision, she smiled.  I thought, "How strange, to give me this news and smile."  It just didn't seem like the two went together.   Maybe she thought of a joke right at that moment. 

[caption id="attachment_2146" align="alignleft" width="225" caption="Wonderful Caitlyn NOT at the eye doctor."][/caption]

As Cynthia told me of their experience at the eye doctor, I wondered where she had discovered such a wonderful facility.  I thought perhaps the next time we gathered up our courage and made a trip to the eye doctor, I could make an appointment at their clinic.  Turns out we were at the same exact clinic, different doctors, but the same clinic.    It made me suddenly wonder if there was a way to make Ellie's experience at the eye doctor as wonderful as Caitlyn's.  Wouldn't that be amazing?  Wouldn't it be amazing if all the children coming to the clinic, even ones with developmental delays or autism or whatever else could have Caitlyn's experience of feeling loved and understood and having a good time?   Isn't that the real test of how well a clinic or hospital is doing, how well the ones struggling the most are treated?

Buttons, buttons everywhere

One day a couple of years ago, I decided I would set off for Milwaukee with my two children in tow to explore the Milwaukee Children's Museum.  And in my mind, the real reason, to go to my all time favorite Milwaukee restaurant.  The only Milwaukee restaurant every reviewed by our local artsy newspaper (the Isthmus).  I was ready for an adventure, ready to explore new terrains.   Both of my children slept almost the entire ride to Milwaukee (around an hour and a half), making it a highly peaceful ride.  As we neared the city, I noticed there was some construction, thus the exit indicated in my directions was closed.  As I began to slow down, both of my children woke up from their naps.  As soon as Ellie woke up, she started earnestly discussing her desire to go home.  RIGHT NOW.  Oh boy, I thought, we've got trouble right here in this car.  Well, I began to explain how we had just arrived in Milwaukee and we were almost at the restaurant and how we really needed to let Ben outta the car to run around a bit before heading back to Madison. 

Ellie became really quiet in the backseat as I continued to ponder what to do if she pooped out this early in the trip.  Suddenly, Ellie said to me, "We can go there now.  My fun button was turned off and I just turned it back on."  Brilliant.  From their began our discussions of the Fun Button, which eventually morphed into the Jutton (joy + button).  Now Ellie talks about juttons almost nonstop, handing them out to everyone she meets and insisting that others go to jabool (joy + button + school) to learn what a joy button is and its proper usage.  No doubt if you have seen Ellie within the last 6 months, you have attended Jabool yourself.

More tales of Ben

[caption id="attachment_2123" align="alignleft" width="300" caption="Ben adores taking photos."][/caption]

One of the things that has impressed me most  this summer is how Ben knows what to request that will increase the possibility of  a "yes" response from his sister.  He has not asked the entire summer to go to the park, which he knows is not a favored spot for his sister.  Instead, he might ask to go to the beach or the library.  However, as we have begun to discuss Ellie going back to school, he has started making plans to go to the park, the zoo, the coffee shop with the dinosaurs, all activities that Ellie would not enjoy.  While Ellie has not had as much energy lately, we have not been able to do as much outside of the home or even have visitors,

[caption id="attachment_2126" align="alignright" width="300" caption="Hey! He actually got his whole face this time..."][/caption]

while Ellie is resting.  Ben has never complained.  

Friday, we had planned to go to one of Ben's favorite libraries, it has TWO train tracks.  All morning he talked about going to the

[caption id="attachment_2127" align="alignleft" width="300" caption="The Ben perspective of most people...legs."][/caption]

library as I  made meals and got everything ready to go.  Every time Ellie would almost fall asleep, Ben would say rather loudly, "Ellie!  Don't fall asleep!!"  By the time I was ready for departure, Ellie's energy had taken a nose dive and she was no longer up for going.  Oh boy, I had that highly uncomfortable feeling, known to mothers everywhere, of  having to choose between my two beloved children.  I sent Ellie upstairs for a rest and Ben and I

[caption id="attachment_2128" align="alignright" width="300" caption="Are heads REALLY necessary for a photo? "][/caption]

discussed what we could do while Ellie rested.  Ellie soon arose from her nap, ready to go to the library.  Ben in the meantime had gotten hungry and was sitting down to yet another HUGE snack.  He ate and ate and ate.  By the time he was finished eating, Ellie's energy again had taken a downward turn.  When Ellie said, "I don't feel up for going to the library."  Ben responded with, "That's good because I changed my mind, I don't want to go to the library."  As I sighed a big sigh of relief, I decided that going to see Ice Age 3, Return of the Dinosaurs would be a really special treat for Ben when Thom returned home from work.

One day, my neck was feeling a bit sore.  As I lay on the bed nursing my injury, and taking advantage of the opportunity to be horizontal in the middle of the day, Ben suddenly

[caption id="attachment_2129" align="alignleft" width="300" caption="The photographer allows another to take his photo..."][/caption]

looked at Ellie and myself and said, "You can't play because your head is broken."  To which I sort of looked at him in surprise, I immediately thought of all the times Ellie has had her head cut open, making it appear as if her head is in fact, "broken".  Ben sensing my shock, began backtracking and said, "No, I mean your NECK is broken."  Oh yeah, now I get it.   

When Ellie suddenly came up with the idea of a Silly Garden, Ben jumped in with silly faces, silly words, silly voices.  He was all over creating a silly garden. 

I just do not know how I would have survived this summer without Ben's willingness to find fun wherever he is, at home, at the park, in the bathroom.  Without his laid back demeanor and understanding of his sister's needs, it would have been a MUCH MUCH more challenging summer.

Hospital talk

[caption id="attachment_2110" align="alignleft" width="300" caption="Just because I cannot resist a close up baby shot.."][/caption]

The hospital is a world unto itself.  It has its own particular time zone (aka "hospital time") and language (aka "medical jargon).    Why do you think so many soap operas are set in hospitals?  Lotta drama happening there.  When Ellie was first diagnosed at 20 months, I spent 2 weeks with her in the hospital only leaving to shower at Ronald McDonald House down the street.  My superb friend Betsy C. warned me that it would feel strange going back out into the 'real' world after being so completely immersed in the hospital.  I recall at one point taking a walk around the University of Chicago campus where the hospital was.  It was a beautiful fall day and there were all these people out

[caption id="attachment_2113" align="alignleft" width="300" caption="Cutey patooty baby Ben."][/caption]

enjoying the unexpectedly beautiful fall day.  Didn't they know my life was suddenly, inexplicably altered forever?  How could anyone just be walking their dog when my life had changed so?  It was definitely culture shock trying to re-emerge from the hospital back into a day-to-day routine.  

Suddenly being back home means being responsible for all aspects of medical attention the hospital was previously

[caption id="attachment_2114" align="alignright" width="300" caption="New born Ben."][/caption]

covering.  Not only that but getting used to being around a lot fewer people takes some adjustment, particularly since Ellie may or may not be feeling up for many activities.  Now that I understand the post-hospital let down, I am better able to prepare myself for it physically (by doing all the laundry, cooking, cleaning before her return) and psychologically by calling a friend or making plans for someone to visit us at home.   

Then there is the adjustment from telling hospital personnel every detail of a physical condition to telling a neighbor

[caption id="attachment_2116" align="alignleft" width="300" caption="Fun always seems to find Ben, even as a baby."][/caption]

the generalities.  Realizing that not everyone wants to know what a ventricle is.  Or an astrocyte cell.  Or any number of other things.  How do you go back to discussing the weather and its implications when it feels as if something so much bigger is happening? 

Sometimes, many times, it is hard to know how much to talk about all of this hospital/medical stuff.  There is the perspective of ignoring it, pretending like it never happened.  But then it has been such a big part of our experience thus far, it can be

[caption id="attachment_2117" align="alignright" width="300" caption="Newborn Ellie (then known as "Betsi".)"][/caption]

bothersome to ignore it too.   Sometimes the listener does not know how to respond when I speak of brain tumors or shunts or brain surgery or MRIs.  Should they be sympathetic, nonchalant, ignore it?  It's the people who respond by seeming downright uncomfortable that then I somehow talk about it even more.  I will think, "OK, they are uncomfortable, don't talk

[caption id="attachment_2118" align="alignleft" width="225" caption="A favorite photo of her father."][/caption]

about brain tumors any more."  Which on a normal day is easy to do, but once I tell myself that, the only thing coming outta my mouth is more about brain tumors.  Then I'll think, "Seriously, quit talking about brain tumors."  And again, the next thing outta mouth is something medical.  Once I told Ben's art teacher that his sister had a brain tumor.  And she  just responded with an, "OK" and then continued talking as if she heard about somebody having a brain tumor every day of the week.  No biggie.  It was refreshing just to be able to say it  and not feel as if I had to comfort or reassure the listener that we are not a brain tumor, but are a family thriving.  And it made me feel a little bit less real world culture shock.

The chip or the bag?

[caption id="attachment_2104" align="alignleft" width="300" caption="Eating chips..."][/caption]

So the other day we were at our local grocery store (Willy Street Co-op).  Ellie has had low sodium as of late and chips have sounded like the most wonderful thing to eat to her (and that excites her endocrinologist).  Well, as Ellie was munching on her bag of chips, ingesting that much needed salt, she dropped one chip on the grocery store floor (Ellie would say, "that rhymes!!)  Unlike her brother, she did not snatch it up off the floor and pop it into her mouth before I could protest.  Oh how sad she was for that lost chip.  She looked at me, on the verge of tears, bemoaning the fact that the chip had been dropped.  She couldn't believe something like this could happen to her.  I said to her, "You can focus on the chip OR you can focus on the entire bag that you can still eat."  I thought how easy it is to focus on the fallen chip, rather than the bag of chips that we have.  We feel as if we have to fix the fallen chip, make it better, talk about it, feel all the feelings, call a friend, write a blog.  When appreciating the rest of the bag feels so much better.  What an amazing teacher she is!

That's my story and I'm sticking to it.

[caption id="attachment_2086" align="alignright" width="300" caption="Ben, our very own, "Gilda Radner"."][/caption]

At the gym the other day, someone was talking about a fundraiser for Gilda's Club (a support center for people experiencing cancer.)  One woman piped up that Gilda was a woman who died of ovarian cancer.  That statement made me feel as if I were physically punched in the stomach.  Gilda Radner was SO much MORE than how she exited this experience!  She was such a fantastic entertainer, paving the way for female comedians today.  I understood that this woman was trying to explain what Gilda's Club was, but not only does that definition not capture what Gilda's Club is, it only captures a minuscule part of Gilda's LIFE. 

[caption id="attachment_2087" align="alignleft" width="300" caption="More silly Ben faces."][/caption]

Often times when I am telling someone for the first time that my daughter has a brain tumor and that she was diagnosed with it at 20 months, they will get this shocked sad look on their face.  I would probably do the same if someone were telling me this story.  As I am telling the details of this story, sometimes, I think to myself, "Wow, this SOUNDS really bad."  Talking about shunts, surgeries, hypothalamic obesity, thyroid malfunction, precocious

[caption id="attachment_2088" align="alignright" width="300" caption="Ben showed up at just the perfect time and has added so much to our family."][/caption]

puberty, loss of vision, sleep disturbance, lack of communication between the hypothalamus and pituitary gland.  It all sounds so incredibly terrible and dramatic.  I am quite certain if I spent a great deal of time contemplating it, I could get myself quite worked up about it (and sometimes I do!)  But this medical description in no way captures our experience.  How can you feel sorry for one of the happiest kids I know?  Whose main goal almost every single day is to spread her joy or be as silly as she possibly can.  SHE does not feel bad about having a brain tumor.  Having a brain tumor isn't even really a part of her

[caption id="attachment_2089" align="alignleft" width="300" caption="What could be funnier than a wide open mouth? I bet one of the doctors would appreciate that pose..."][/caption]

experience.  She is used to going to the hospital, so it's just a place we go like the library, school, the grocery store.  

Here's the story that I feel best about.  Ellie decided before she chose this physical body to come have the experience she is having.  This is what she is working on and allowing us to work on too.  When I think of this, I am filled with awe of her courage.  Thom & I were chosen along on this incredible journey.  This journey called "brain tumor" is not really a part of her experience, she's got more important things to do.  

[caption id="attachment_2090" align="alignright" width="300" caption="Ben has turned the world upside down for Ellie! Still, she is NOT amused by his picture taking..."][/caption]

Our lives have been transformed having Ellie in our midst, she is a constant reminder to stay present, appreciate this moment , to focus on what is important and not get waylaid by minor irritants. 

[caption id="attachment_2092" align="alignleft" width="300" caption="Ben adores a photo op."][/caption]

Last week, Ben, Ellie, and I were walking to Willy Street Co-op.  As we were walking, Ben shouted, "Hey there's my favorite color, purple!"  It was a purple van that Ellie had noticed on the previous day's walk.   I said, "Wow!  You and Ben have so much in common--you both adore purple, you both think I am the best mom in the whole world..." to which I began to chuckle at myself for my little joke.  Ellie looked at me strangely, she had no idea why what I had

[caption id="attachment_2091" align="alignright" width="300" caption="Ellie plays the guitar, while Ben continues to make funny faces."][/caption]

just said would be funny.  She thinks that me being the best mom in the whole world is the TRUTH, not a joke.  What other 9-year-old would not roll his/her eyes at a parent for saying such a thing?  Not our Ellie.  It was one of those amazing, shining, fleeting moments where I was so filled with appreciation and gratitude that I did not want to change one thing about our lives.  And if all of this is what she comes with, well, it's worth it.