"It just gets better from here"

[caption id="attachment_1936" align="alignleft" width="300" caption="Ellie in her spring class concert, something we never ever imagined possible..."][/caption]

The title of this blog is a quote from an article in Good Housekeeping (April, 2009; volume 248, no 4). about Michael J. Fox.  After describing the challenges he has in getting out of bed, urinate, get dressed, things you or I might take for granted, he finally arises from his

[caption id="attachment_1935" align="alignright" width="300" caption="Finally a picture of the infamous Ms. Zwart (her real name)"][/caption]

bedroom and is greeted by a mirror in the hallway.  In the mirror he sees his face smiling and he has to wonder, "Why am I smiling?"  But then he thinks, "It just gets better from here." 

Well, as I sit here in the hosiptal, awaiting my 9-year-old daughter's sedation and MRI, I know that

[caption id="attachment_1939" align="alignleft" width="300" caption="Ellie joins her class in the clapping part of the song."][/caption]

"It just gets better from here."  For the past week and half, Ellie has not been feeling well.  She has felt nauseated, been throwing up and had much less energy.  She has been taking naps, some of them long some of them short throughout the day.  Looking at her face, with that not so well feeling on it has made me feel utterly sad.  Anyway, I know that no matter what, it all gets better from here. 

You might feel sad, angry, frustrated, despair in hearing that we are, once again, in the hospital, but I can also tell you that there have been moments of pure peace as my family sits in the hospital (I almost called it a "hotel",  I prefer to think of it as such) all together with not much else to do besides be with one another.  Sort of pairs it down.  I mean every experience is filled with a variety of emotions, being in the hospital is no different, although the intensity of those emotions may feel amped up.  Of course I would rather be out enjoying this fantastic weather, but I will think of this as an investment, that it will be getting better...

A Love Fest

[caption id="attachment_1077" align="alignleft" width="300" caption="Ellie on her first birthday..."][/caption]

A friend in Chicago was telling me how she went to an event for Autism at Soldier field.  Her nephew, who is autistic, started doing his "thing" and she suddenly felt the expansive feeling of freedom in knowing that in that particular setting, his behavior was not at all out of place.  I am fortunate enough to live in a neighborhood and have my daughter attend a school where we are allowed that freedom quite often. 

On memorial day, Ellie and I took a walk to Willy Street Co-op,

[caption id="attachment_1079" align="alignright" width="300" caption="How many fingers can I get in this mouth?"][/caption]

one of our favorite neighborhood haunts.  We were on a "date", a special time for just the two of us to connect.  As we walked through the grocery store, Ellie sang loudly to me, "I LOVE YOU!!"  To which she wanted me to sing back the same, it is our little game, typically, however, it is played in the privacy of our  home.  Several people commented how adorable it was that Ellie was singing this wonderful song to me.  To which I responded, "I know, can you

[caption id="attachment_1078" align="alignleft" width="300" caption="I love the hairdo in this one and the somewhat uncertain look..."][/caption]

imagine being serenaded through the grocery store?  How lucky

am I?"  Because really how many mothers are that fortunate to have their 9-year-olds singing them love songs all the day long regardless of time or place?  And how lucky are we to live in a neighborhood and frequent a grocery store where the patrons not only get Ellie's love song, but they appreciate it? 

As we were walking home on Williamson Street, a young man suddenly yelled excitedly, "Hi Ellie!"  I looked around and saw a boy sitting on his front porch.  I asked Ellie who he was and he

[caption id="attachment_1080" align="alignright" width="300" caption="Taking the party dress for a test drive..."][/caption]

responded by saying, "I am Justin, I am in Ellie's class".  Ellie tit tatted (talk + chit chatted) with him for a few minutes, demonstrating her new walk (called the "hip walk") and throwing him some snuggles before doing a double wave good-bye.  Once again, I was

completely blown away at how patiently and intently he listened to Ellie's entire demonstration.  We have run into so many shining stars in our neighborhood, people who do not merely tolerate Ellie but enjoy her stories, her words, her snuggles.  We feel the freedom of not only understanding and acceptance, but  love so often here.

The cafeteria lady

[caption id="attachment_1063" align="alignleft" width="300" caption="The only photo I could find in my computer is of Debbie Martin's arm, with her daughter sitting in front of her."][/caption]

Earlier this week, we had an appointment at the hospital.  We have tried to make going to the hospital, particularly if there is a poke involved, as enjoyable as possible.  Maybe make it about going for a muffin rather than about the things we don't enjoy.  So after conversing with the doctors, Ben, Ellie & I headed to the cafeteria.  There is a woman who works in the cafeteria who totally reminds me of my great friend Debbie Martin. 

Well, when Ellie was in the hospital last year, I had a

[caption id="attachment_1065" align="alignright" width="300" caption="Seriously, that is one cute baby..."][/caption]

moment, where I started telling the Debbie Martin look-alike my entire life story.  Embarrassing.  It seemed like she did not know what to make of my unveiling, "Yeah, that's great, I gotta go fill the straws...."  "Boy, these cups are really low..."  After I got home for the day, I was feeling rather foolish and I e-mailed Debbie Martin to tell her how silly I'd been.  Well, Debbie replied that everyone should be so lucky as to have a cafeteria lady to confide in every once in a while.  Made me feel a bit less red-in-the-face. 

Well this week, we saw our Debbie Martin look-alike cafeteria lady. 

[caption id="attachment_1066" align="alignleft" width="300" caption="Megan looks a bit suspicious in that photo and that may be a Debbie Martin hand in the background..."][/caption]

When I saw her, all of my good feelings about Debbie arose and I  caught myself  about to start waving excitedly.  Then, I thought, get a grip, she is not going to be that excited.  When we bought our muffins and came to sit down, the cafeteria lady saw us and she became excited, and started waving like mad.  I thought perhaps there was someone behind us that she knew.  So I sort of casually looked around.  But, no, she was actually as excited to see us as we were to see her.  I mean she totally could have played it safe and just had a nice, calm wave, but no, she risked making a fool of herself by being overly enthusiastic.  That is totally the kind of person that I want to be, to be brave enough to show that I care about other people even in the face of losing my "cool".  (This is where some of you might say, "What cool? Don't worry you don't have any cool to lose, so go ahead and get excited." )

And the award goes to...

[caption id="attachment_1016" align="alignright" width="300" caption="Kippy getting ready to PAR-TAY the Elmo way..."][/caption]

When my brother Kip was in college, he belonged to a fraternity.  (I know, totally blew my mind about what a fraternity man looked like because Kip is the antithesis of the beer guzzling, skirt chasing man I stereotyped.  My brother-in-law, Dan belonged to the same fraternity and again the opposite of how fraternity boys are portrayed in movies.)  Well at the end of the first year in the fraternity (which Kip later became the president of, that overachiever) he was awarded "The Most Improved" Fraternity member.  I recall thinking, "Huh".  It seemed like such a backhanded complement.  Like when someone says to you, "Wow!  You look so much better than the last time I saw you!"  Or "There is no way you are 40!  I can't believe it, you don't look FORTY!" This may sound like a complement, but if it is said repeatedly incredulously enough, it starts to feel like, 40 is not THAT old for crying out loud. The first meeting of my coaching group, I arrived a total wreck.  I had just discovered that my youngest brother was in the Intensive Care Unit and details were sketchy at best (even the "d" word was being thrown around a bit, no not the 4 letter one, the 5 letter one).  When I shared with my sister afterwards what a slobbering, blubbering fool I was that day and how you just can't make a second impression, she suggested that perhaps I could utilize my dramatic start by proclaiming at the end, "This coaching group completely cured me, I mean look how far I've come!!"

[caption id="attachment_1032" align="alignleft" width="300" caption="Duck towels are so adorable."][/caption]

The reason I was thinking about all of this was because I feel like Ellie should receive "The Most Improved" award from school.  Contrast the first day of school, when Ellie cried rather loudly outside her classroom to a few weeks ago when she went on a field trip to the zoo with her class.  Not only did she go on a field trip, she rode on the city bus (yes, Madison has city buses) beside one of her classmates.  She was nervous about going on a fieldtrip because she loves knowing the routine at school.  When she started to become upset prior to school, she was able to think her way back up to goofiness. 

[caption id="attachment_1035" align="alignright" width="300" caption="Anyone looks more photogenic w/ a baby in a ducktowel next to them. Try it at your next photo opportunity."][/caption]

I was not sure if we were going to make it through the school year at the begining, and without the stellar school community we have I am not so sure she would have. 

One day I was at school waiting for Ellie with Ben.  Two grade school girls ran inside past us and into the principals office, stating how they were going to go get the principal.  I thought, "WOW!  I have needed that kind of spunk a few times at the hospital to get things done!"  What amazed me was that the principal came outside and had a discussion with the 4 girls who were involved in conflict.  She did not scold them for coming to her, she took action and jumped right in to see how she could be of assistance.  I was astounded.  I mean in my day, the principal was there when you were in TROUBLE with a capital "T" and in that sing songy kinda voice.   

The love and care and respect and kindness that has been shown Ellie throughout the school year has been above and beyond what I ever could have imagined.  From Ms. Zahrt and Ms. Lowery and Ms. Renault to the superpowers of Ms. Zwart.  Ms.  Renault (one of the student teachers) created a fabulous book about emotions with Ellie and her class.  A page in the book that makes me tear up every time says this, "...I want everyone around me to feel happy and spill goof every day.  I make people smile everyday beccause it is my job and why I am a fabulous person!" 

I'll let you know if Ellie wins the award, and if she does, I will not view it as a backhand complement, because I know how far she has traveled this year.

Good health and a bad memory...

[caption id="attachment_1008" align="alignright" width="300" caption="Uncle Kippy once again captures an Ellie moment."][/caption]

 "Happiness is good health and a bad memory."  The perfect saying for Ellie.  She told us recently that she did not enjoy her Physical Therapy at school that day.  We asked what exactly had happened in PT (that's medical lingo for Physical Therapy for all you laymen out there.)  She could not recall.  Thom & I agreed that that is the perfect response to something that you do not like, just forget about it.

Ben & I were at Trader Joe's and this extremely friendly older man came up to say "hi" to Ben.  He was excited to see Ben and wanted to know what his name was.  He told me, "Wow, you

[caption id="attachment_1006" align="alignleft" width="300" caption="I doubt if this baby (not sure who he is) recalls the intensity of this hug, hopefully he just still feels the love. "][/caption]

really have quite a helper there!" To which I responded what a great helper Ben is, I am always working that "great helper" angle for all it is worth.  The next aisle, we ran into the same man and he asked once again, "What is this little guy's name?"  To which I responded again, "Ben".  And the man said something funny like, Ben without the Hen.  Well, when we got to the next aisle, the man asked once again what my son's name was.  And then like a lightening bolt, I finally understood that he was completely not recalling that he had just met us one aisle over.  So each time he asked, I responded as if it was the first time he asked because that is what I have appreciated people doing when Ellie repeats her stories or

[caption id="attachment_990" align="alignright" width="300" caption="Ben has always been enthusiastic in whatever he chooses to do."][/caption]

questions.  What struck me was how incredibly happy and practically downright jolly this man seemed.   He was having a good time not remembering, appreciating each time he met Ben, over and over again. 

Ben & I were at the library and Ben was quietly drumming on the shelf I was perusing.  Suddenly the patron who had been looking at books on the opposite side of the shelf leaned over and said sternly to Ben, "Stop that right now!"  I was shocked.  I mean if an adult were doing the same thing, would this patron have asked in

[caption id="attachment_986" align="alignleft" width="300" caption="Oh man is that ever sweet!"][/caption]

that way?  Why because Ben is smaller, less experienced should he be yelled at?  It irked me.  I wish I had said, "There is no need to speak to him in that tone."  Maybe I would have even said it in a British accent to make it sound classier.  Ben of course, as children do, was over it by the time he reached the train table.  I on the other hand spent part of my day pondering what I could/would/might have said...If I had said something British and snotty, I might then have obsessed and felt guilty that I had hurt someone else ...What I

[caption id="attachment_112" align="alignright" width="300" caption="Good time Ben, he does not stay mad for long..."][/caption]

 really want is to completely forget about that part of our trip and appreciate the wonderful time we had together and the super books and videos we checked out.  I want to know that this woman even in her manner of speaking to Ben was doing the best that she could at that moment.  She must have been startled to find a drummer in the library.  Perhaps she felt that the only way to be "heard" was to use such a voice and that seems a bit sad to me.  It never feels good to me to snap at someone else and to feel that this is the only way to obtain what you want would be sad indeed.  Ultimately, this woman did not hurt me in anyway, I was annoyed, it is true.  I felt protective of Ben.  Is Ben hurt? Not at all. 

Maybe I should be more like Ben & Ellie & the jolly man at the grocery store and just erase it from my memory.

(Yes, Cynthia, you guessed it, this was Sun Prairie Library.  I am ever so greatful to Sun Prairie Library for giving me so many topics to blog about. )

The gift

[caption id="attachment_1025" align="alignleft" width="300" caption="Ellie spreading her joy to newborn neighbor Max."][/caption]

Ben and I were at the library recently, there was a girl sitting with her backpack at a table.  She was mumbling to herself about how she wanted to eat pizza.  She reminded me of Ellie in some ways, I could tell she wasn't all here with us, part of her was elsewhere.  I thought of all of the people in our lives who have shown great kindness to Ellie, listening patiently, enjoying her words, giggling with her.  How much each of those people have enhanced our lives.  I decided I wanted to pay that kindness forward to this little girl.  As she looked up, a bit startled to see Ben & I racing through the library, I gave her a big heartfelt smile, like I really meant it.  The way she smiled back at me was so filled with love and innocence and wonder that I knew in that moment that I was not doing her any favors.  Even though I had meant to give her the gift, instead the gift was given to me.

Unexpected Twists (and a bonus! Fun Ways to Decorate your Head)

[caption id="attachment_1022" align="alignleft" width="300" caption="One of the first hat & sleeping moments.."][/caption]

On Thursday morning I was reminiscing about how last May, after Ellie's surgery, her body was having trouble regulating  temperature.  She would spike up to 107 degrees one night and then jump down to 94.   At one point, the PICU nurse after checking 3 thermometers to make sure she was getting an accurate reading, put an extremely loud electrical medical warming blanket on Ellie to try to elevate her temperature.  After an hour of warming, she checked her temperature, and it had not risen.  I suggested that I snuggle in bed with Ellie and try using my body heat.  I crawled into bed, avoiding all the tubes and lines running all over the bed into Ellie and laid down beside my sweet girl.   So greatful was I to snuggle up against Ellie to do

[caption id="attachment_357" align="alignright" width="300" caption="Ellie hats began at an early age.."][/caption]

something, anything that might be useful to her.  Fortunately, after an hour, Ellie's temperature did raise from the "body heat" method.  I was thinking about how this might be blog material, discussing how sometimes the simple way, the easy way is actually the most effective. 

With thoughts of the possible blog in the back of my mind, Ben &

[caption id="attachment_1011" align="alignleft" width="300" caption="Another Ellie hat moment. More like "Get this hat offa me!""][/caption]

I went to Ellie's music concert.  Ben was super excited about the concert and had been asking all day when we could go to the concert.  We had been listening to the music on CD and tape in an attempt to memorize the songs.  Ben had all the songs memorized, Ellie on the other hand, kept insisting that she did NOT want to sing on stage.  Growing tired of the conversation, I suggested that perhaps she should lip sinc.  Her teacher, Ms. Zwart, insisted Ellie sing with the class as she noticed that Ellie

[caption id="attachment_1019" align="alignright" width="300" caption="The 3 c's of successful hatwearing--cozy, cute, comfortable."][/caption]

has an excellent singing voice and loves music, continually

singing songs of her own making.  I envisioned Ben singing from the audience while Ellie did NOT sing from the stage.  Or maybe the audience would think that Ellie was somehow throwing her voice without moving her lips while Ben actually sang the songs.

When we arrived at school near concert time, unfortunately, Ellie saw us and thought it was time to go home.  She became highly upset  when she realized instead it was concert time.  Not a good start to the whole extravaganza.  Ms. Zwart came in like a

[caption id="attachment_1024" align="alignleft" width="300" caption="Another strawberry hat photo, because those cheeks are so cute."][/caption]

superhero and saved the day, taking Ellie by the hand and escorting her upstairs.  Ms. Zwart has a super power of being able to calm Ellie down in a moment's notice.   I keep expecting to spot her superhero cape underneath her teacher disguise. 

When the concert began, Ellie stood on the front row of the risers next to some of her classmates.  The program began with a

student reciting a poem.  The entire time he was reciting, Ellie

[caption id="attachment_1020" align="alignright" width="300" caption="She will wear the hairbow, but she will NOT enjoy it."][/caption]

was protesting loudly that she wanted to go home.  Then when the music started, Ellie began singing and dancing for everyone's entertainment.  I felt myself tearing up thinking how incredibly far she has come.  I wished terribly that the lights were off so I could have an "ugly cry", but alas the lights were on and bright, allowing everyone to see my emotional breakdown.   I had to pretend as if I had an allergic reaction to something and just discretely wipe my eyes.  Every time a song came on, Ellie would swing her arms, move her legs back and forth and occasionally clap her belly drum and her head.  When the rest of the class did clap, Ellie swung her arms back and forth to clap them in a much more theatrical way.  Several times, Ellie had a wedgie,

[caption id="attachment_1021" align="alignleft" width="300" caption="A happier hairbow moment."][/caption]

which she had no problem taking care of, regardless of the audience in front of her.  Between the songs, Ellie would become

upset, particularly with the clapping of the audience, she would hold her ears, protesting that it was too loud.  I sort of went back and forth, wanting to yell and cheer and clap for the 3rd and 4th graders and wanting to request that the audience use sign language clap, which would be silent, for Ellie's benefit.  Ms. Zwart stood off to the side and during the nonmusical parts of the concert, she would stand with Ellie until it was time to sing again.  

[caption id="attachment_1027" align="alignright" width="300" caption="Ellie all decked out for Easter Sunday."][/caption]

I always try to dress Ellie in a long shirt or dress because her pants tend to slowly ride down her body.  I recall a boy in my grade school whose pants were forever falling down, revealing the top part of his derriere, currently referred to as the "coinslot".   At one point in the concert, Ellie got an itch on her back.  As she tried to scratch

it, she began to lift up her dress and I said aloud, "Oh no!" because I knew the entire audience was going to be getting an eyefull.  Fortunately, it did not last long and I am going to assume that all the parents in the audience were so attentive to their own child that they did not notice Ellie's coinslot.  The boy

[caption id="attachment_1023" align="alignleft" width="300" caption="The same Pooh hat a month later..."][/caption]

standing next to Ellie continually encouraged her throughout the concert, telling her how many more songs they were going to sing.  When a child from another class stood up to sing a solo, Ellie kept singing, unabated as her classmates looked at her astonished that she would sing during someone else's solo.  Ellie, being Ellie, of course did not notice the looks of horror aimed in her direction, but just kept right on singing along.  The exact opposite of what I had envisioned beforehand--Ellie not singing at all. 

I think the thing that was most astounding to me was thinking that a year ago, Ellie lay in a hospital bed unable to regulate her

[caption id="attachment_1026" align="alignright" width="300" caption="The one and only time Ellie wore pigtails."][/caption]

body temperature.  After the concert, Ms. Zwart and I conferred on how we had both felt emotional seeing Ellie up there performing.  And I knew for sure that Ms. Zwart was in fact a superhero disguised as a teacher.  How else could you explain someone so invested in your child's life?  She really understood how momentous this was.  Today she stood on a stage in front of her entire school and flashed them (unintentionally of course).  If you would have told me a year ago this is where we would be, I never would have believed it.  Amazing!