My Pooper Trooper

I would be remiss if I didn't give a huge shout out to my fantastically amazing husband.  I am in awe of all that he does on a daily basis without complaint (typically).  He is another one of my heroes.  Every evening he stays up until 11pm to give Ellie her last dosage of medicines for the day.  Every day he sets out in small containers all the medicines she will be ingesting for that day.  So that I don't have to even think about it but can just grab it and go give it to her.  When hospital or medical personnel ask me what she is taking, I feel like a real dum dum because I can only guess.  I refer them to Thom.  And now that Ellie is back in pull-ups almost every day he wakes up and changes her and her sheets and her outfit because typically she goes right through everything.  He is a pooper trooper.  I love that when we have a mess to clean up, whatever that may mean in any given moment, we are able to jump in and do it together.  We have developed a synergy that just flows and makes it easy, often times not needing words, but getting it done.  I love that he is my best friend and will listen when I cry.  He knows how to hug.  I love watching him with Ellie and how gentle and kind he is and how excited he became when Ellie gave him a huge smile upon his return home from work on Wednesday.  I love how committed he is to us as a family, that he loves spending the evening watching a movie and eating pizza.  I love that we have the same quirky sense of humor.  I do not know how I would manage this journey without him.

Ellie has had another amazing day of being more alert and awake than she was earlier this week.  Thanks to Ms Zwart for once again reading to Ellie.

That Smile

A huge shout out to Ms. Stark for the box of food including veggies soup, noodles, 2 loaves of delicious homemade bread and some of the best chocolate cookies we've ever tasted (not to worry Ms Zwart, you are still in the running).  She has been checking with me for months trying to schedule a visit and I am so happy the timing was so perfect today as she came when Ellie was awake and alert.   

Also a great big shout out out to my brother, Kip for his fabulous visit.  He created a wall of love next to Ellie's bed filled with pictures of the people Ellie loves.  That way when she feels like only sitting and staring, she can look at the wall. 

A humongous shout out to my mom, our laundress, for keeping our home so tidy and forever working on a load of laundry. 

One day recently, Ellie was awake and alert with a roomful of people.  I walked in and when she recognized me, her face lit up with joy.  Oh and I was so appreciative of that moment, wanted to savour it like a Gail Ambrosius Chocolate.  I mean seriously how many moms of 10-year-olds get that kind of reaction from their daughters?  How lucky am I?  There aren't even words big enough to describe how jilled I felt at seeing her so jilled to see me.  Makes me teary just remembering it. 

As I go about my days now, much of the time I feel at peace and connected with all around me.  Then I will suddenly be struck by the darker thoughts.  The ones about how I will never have Ellie sidle up to me while I am working in the kitchen.  I will never take a walk with her again.  I will never go to a restaurant with her again.  The finality of it all seems insurmountable.  How will I get over this mountain of grief? And yet I know I must because the very last thing Ellie would want would be for me to be stuck in the muck.  She would want me to somehow find a way to stay jilled.  For me that is her grandest lesson of all.

What a Difference an Hour makes!

Ellie is as I am typing sitting up in bed peeling crayons.  We are playing office just like the old days.  She was awake and alert enough to even take a bath this morning.  I mean like in the bathtub.  The CNA, Stephanie (just like Ellie's school nurse, one of her favorite Marquette peeps) told Ellie to have a great day and Ellie did her standard line, "It's too late, I already am." She responded to a flower drawing her cousin, Mia had made with that is glorgious (glorious + gorgeous).   Jilled I am (that sounded like Yoda didn't it?)

Let's Play the Quiet Game

[caption id="attachment_3233" align="alignright" width="300" caption="A somewhat quieter Ben"][/caption]

Yesterday I once again had the realization that my Ben is as loud, if not louder than 4 of his cousins.  I mean he becomes so excited when we have company that he truly becomes BEN plus.  We were all sitting around the dining room table and the adults were attempting to have a conversation.  The more we tried to converse, the louder Ben became in order to better be heard.  Suddenly, I wondered aloud who could be the quietest.  All the children became silent as the adults continued to rapidly converse during this rare opportunity.  That lasted about 2 minutes before Ben shouted, "I win!!  I was the quietest!!!" 

Ellie woke a couple of times yesterday.  She has a pretty good cough now which seems to be somewhat impacting her ability to breathe.  Both Hospice and our endocrinologist have checked her out and let me know that she seems comfortable.  Over the last 24 hours she has definitely been asleep more than she has been awake.  She is sleeping now. 

Super big shout out (again!) to Ms. Zwart for sitting and reading withEllie yesterday so I could introduce my sister-in-law to the wonder of Dig-n-Save.  If you haven't heard of Dig-n-Save (shock) then let me tell you it is one of my favorite places in Madison.  It is the outlet store to the St Vincent de Paul Thrift stores, containing huge boxes of clothes ($1 a pound) and toys in bins (.35 a pound).  Sara and I had a funderful time.  But I digress.  I mean I can talk about Dig-n-Save all the live long day (ask my brother Kip and he will sigh and say that alas it is so.)  Ms Zwart not only came over at a moment's notice, but she brought chocolate chocolate chip cookies with her (yes that was a double chocolate) .  Which prompted Thom to say, "That Ms Zwart knows her way around a cookie!"  He felt that not only was the taste superb but the texture was perfection.  (These cookies are now GONE so don't drop by seeking some.) 

Today our house seems so quiet after a day and a half of fun with Dan, Sara, Zach, Noah, Mia, and Hannah.  And surprisingly clean and tidy which I blame on my marvelous mother and stupendous sister-in-law.  I guess mostly I just want all of you to know that even amidst Ellie seemingly getting closer to her transition, the anguish and grief and tears we all share, there are pockets filled with laughter and joy. 

 

Could this be romantic love?

[caption id="attachment_3225" align="alignright" width="240" caption="Mia before her woodworking days."][/caption]

I feel like I can't write today.  And I want to keep you all updated.  So here is a blog on a non-writing day.  Which may mean it doesn't have much pazzazz.  But there you have it. 

Yesterday, Thom's younger brother, Dan and his lovely wife, Sara and their adorable children, Zach, Noah, Mia and Hannah all arrived from Virginia.  They DROVE from Virginia to be here.  With 4 children in the swagger wagon.   At one point, Mia and Thom were locked in the basement for quite some time.  I am not a fan at all of the basement and even threat of tornado does not send me scurring there.  I mean I would have to be able to physically see the tornado out my window in order for me to be motivated to take my family there.  Probably being from Kansas City also promotes this attitude, because we know tornadoes in KC.  When Mia emerged from the depths of our home, she was super excited because she and Thom had been doing woodworking together.  By woodworking, I mean, attempting to put a hole in a board and sanding it down. 

[caption id="attachment_3224" align="alignleft" width="300" caption="Sweet Hannah"][/caption]

Ben and his cousin, Hannah were playing together when Ben suddenly announced his love for Hannah.  Hannah asked me exactly what kind of love this was.  Was it romantic love, marriage love, family love?  I tried explaining that it was family love because Ben is her cousin.  Well this did not make a lot of sense to her, because she knew he was not in fact a brother or father.  Later, Sara explained that there are a couple of boys in her class who have declared their devotion, so it was as if Hannah just wanted to see if this was yet another offer. 

Big shout out to Ellie's 5th grade teachers- Ms. Cratic and Ms. Corsi for dropping off gifts and a yummilicious meal!  We had such a nice visit in Ellie's room.  Even though Ellie never woke up during the visit, I know she felt the love.  Once again a shout out to Ms. Zwart for reading for hours on end to Ellie.  And bringing beautiful delicious cookies.  

My marvelous friend Jenny stopped by with her family on the way to the Dells.  She walked home with me from Lazy Jane's and we laughed and cried together over Ellie being near the end.  When Jenny came in for her visit, Ellie started coughing and her breathing changed, becoming a bit more labored.  Not as bad as in the hospital but just different.   She may have caught a cold.  She is still maintaining her oxegyn level in her blood (Hospice came and checked for us).  While Ellie was awake and alert most of Saturday and Sunday she was asleep and staring, not talking much most of the day yesterday.  She continues to sleep right now.

Doing the BEST We Can

My motto as of late, has been "Everyone is doing the best that they can."  This is one of the main tenants of Tiara Coaching, the coaching established by our fantastically terrific friend, Betsy C. (Whose recent visit was just so fantastically fabulous I cannot even put it into words.)   In the coaching, the idea was to give ourselves some forgiveness and allowance, but I have found that this philosophy just naturally emanates to all those around me.  It has totally transformed my relationships and the way I feel on a daily basis about myself and those around me. 

Yesterday when Thom woke up, he found Ellie on the floor beside her bed, surrounded by books.  Just like the old days.  Astounding.  A Merry Christmas present to us. 

My sister, Susan, and her husband, the incomparable, Ghany, and their lovely children, Bella, Sophia and Dariush drove 12 hours to visit with us.  Dariush is 3 years old and called Ben his "husband" when they played family together.  At one point Ben started hollering about something occurring in the bathroom.  Dariush ran out with his hands completely covered in soap bubbles.  Ben began shouting how this was so wrong.  Dariush proclaimed that he did not see any bubbles on his hand.  When he was asked to look down to locate the bubbles, he ran off to the bathroom to remove said bubbles.  When he returned, his hands were still covered in bubbles, that is how much soap he'd used. 

Susan and I were reminiscing about the first time she met Ellie.  We were living in a condo in Chicago and Susan was so super excited to meet Ellie, she sprinted up the 3 flights of stairs.  During her visit, we went to a Chinese restaurant where we were suddenly shocked at how loud and smelly and bright the whole place was.  I mean couldn't they make the restaurant more infant friendly for crying out loud?!?!  Also during the visit we had Taco Bell, which at the time we thought of as a healthy food source.  For some reason, Susan felt nauseated and could not eat the scrumptious Taco Bell food.  We knew something was amiss and soon discovered that Susan was pregnant with her eldest daughter, Bella.  Throughout the memories we were sharing, we laughed and wept.  That is one of the things I adore most about my sister how we can go from sobbing to laughing in the same sentence. 

Now my mom is here to help out indefinitely.  We love having my mom around because she just naturally rolls into our family life easily and effortlessly. 

Great big shout out to Ms.Zwart for once again reading to Ellie for hours.  I was contemplating how Ms. Zwart teaching Ellie how to read and how to count has so enhanced Ellie's life.  At times Ellie has spent hours just counting books or pages.  It has opened a whole other world to her that was not available to her before these skills.     

And once again a great big shout out to Chris and Kathy for the awesome presents, for putting our trash to the curb as a secret mission, and for shoveling our walk.  Seriously, I cannot say enough good things about them.  If only everyone had neighbors like them, I don't think anyone would ever move.

Feeling Homey

Not a lot to report today.  Ellie was  a bit agitated today--wanting to get out of bed to her chair, then wanting to get back in immediately.  She keeps saying she is hungry and wants chocolate. even when she is in the middle of consuming chocolate. 

So many shout outs right now.  A shout out to the stupendous Ms Zwart for coming by and reading to Ellie almost every single day AND bringing cookies!  A shout out to the incomparable Betsy C for being our laundress, nanny, counselor, organizer, decorator, driver, deliver-er, cleaner, entertainer, and gift wrapper and gift giver.  I asked her to re arrange Ellie's bears and had no doubt in my mind that she knew exactly what I meant.  For beautiful, meaningful life-affirming e-mails a great big shout out to Kathy Mack (in sunny California) and Zumba Jen.  Thanks to brilliant Brittany for all your visits AND all your texts today even while you are outta town.  Thanks to Karly for shopping with me and allowing me to have a good cry in Target and not feel like an idiot.  And for taking off work.  And for being Santa.  And for laughing at my sometimes inappropriate humor.  How could I feel alone with a friend like you?  A great big thanks to Cynthia, Caitlyn, and Mark for the funderful visit and all the yummilicious bagels and the gorgeous clothes for Lotta.  You ALL rock!  Thanks to Juna and linZ for rustling up some chocolate chip cookies after reading my last blog entry.  Made me feel like a superstar!  A belated thanks to Chris for helping me fold laundry and clean last weekend AND for calling to see when she could join the parade of love.  And of course for putting our garbage on the curb.  AND for shoveling our walk I don't even know how many times.  Geez louise, I don't think we can ever move with neighbors like this!!

On this eve of Christmas, I feel like my home is just filling to the brim with holiday love.  I feel in some strange way as if this is going to be the best Christmas ever.  How wange (weird + strange).

walking the line

(from Wednesday) Once again i am snuggled into Ellie's room with both my girls sleeping peacefully.  sigh.  We have had a funderful day filled with visitors--Betsy C is here from Chicago, Karly took the day off to spend with us, Ms Zwart read to ellie for a couple of hours (and brought gorgeous snowflake cookies) and Esther played dragons with Ben (and brought a huge box of gail ambrosious chocolates). 

Everything has happened, it seems very quickly.  We had another care meeting at the hospital.  This time there was no Dr. Iskandar to rush in with a burst of frustration and hope.  Basically, everyone agreed that Ellie's body is shutting down.  She is now having more trouble filling her lungs with air and swallowing.  She is occassionally awake, but not often talking.  The doctors do not really know how long she has left in this physical form, no one is denying that everything is on the decline.  The general belief is that either her hypothalamus is so damaged it can no longer support her or her brain stem is shutting down. 

This morning (Thursday) Ellie was a bit more alert and interactive.  Better able to communicate, mostly in response to a question than a spontaneous elaboration, albeit in a whisper.  She ate FOUR chocolate chip cookies provided by our superhero, Karly.  She told me she raced to the parking lot of Willy Street Co-op on 2 wheels, securing the valuables for us.  As Ellie ate her favorite food, she just looked incredibly blissful, savoring every single morsal.  We were worried about giving her more to eat and whether or not her stomache would be up for it, however after we took the cookie crumbs away, she continued to try to eat the teddy bears and quilt on her bed.  (She is a bit disoriented and has also been saying that she cannot see.)   

What do I want for this time--to fill Ellie's hours with the people she adores.  A parade of love.  So Tuesday night when we were still in the PICU my brother-in-law, Ghany phoned.  He told me he was feeling like it was time to stop chasing the numbers, time to get Ellie home in her own bed with her own pjs and have her snuggled down. Thom thought that was the best idea he'd heard all day.  He thought if we could do birth at home, surely we could do death here too.  That's where we are at, walking the line between life and death.  While it is filled at times with anguish, grief, disappointment and despair, it is also filled with appreciation, clarity, love, and peace.

Some things seem like a really good idea

like V8 juice--3 full servings of veggies.  But I just can't seem to choke the stuff down.  Anyway.

Yes we are indeed back in the hospital after our week of highs and lows.  On Thursday night, Ellie had 2 seizures, then another one on Friday morning.  After the last one at home she turned a shade of purple.  The Ryan Brothers, a non-emergency type of ambulance was dispatched and Ellie was transported to the ER.  In the ER, it was discovered that  Ellie had a urinary tract infection.  Ellie had yet another seizure in the ER at which time she started having more difficulty breathing.  We were taken to pediatric intensive care where Ellie is now attached to a biPap, a machine that forces air into her lungs.  A chest x-ray showed that Ellie may also have pneumonia.  Today her neurological signs are slightly better than yesterday.  Her blood pressure has been so low that there was concern that she might not be getting enough oxygen to vital organs.  It has begun to go up now.  She has become a bit more responsive but still not talking.  Probably a good thing while she is all hooked up.  Just wanted you all to know the latest.

A big shout out to Cynthia for not only dropping everything to come hang with Ellie while I Christmas shopped, but brought us over cookies and a big ol bag of adorable clothes for Lotta.  Speaking of adorable, another shout out to linZ and her adorable daughter Juna, for watching Ben so that Thom and I could talk with the doctors yesterday.  Finally, a shout out to Karly for watching Ben this morning so I didn't have to take a not-so-well Ben  to the hospital, he's had throwing up in the middle of the night for 2 nights in a row.

Durry (don't worry)

It has certainly been an exciting week around here, filled with ups and downs.  Last weekend, Ellie barely slept at all and started to decline cognitively on Sunday.  I took her to the hospital to get her sodium and shunts checked on Monday.  We knew it was probably being caused by one of 3 s's--sleep, sodium or shunt.  Spent most of the day at the hospital.  Came home and Ellie began a sleeping spree which turned into us not being able to awaken her by Tuesday afternoon.  A wonderful hospice nurse was sent round to assess Ellie and help us figure out what to do.  By the time the nurse left, Ellie was opening her eyes again.  On Wednesday morning, Ellie woke up with, " I think I have a stuck yawn."  She has been awake since then (now Thursday afternoon).  She has started to decline cognitively once again.  Now she is laying in bed staring, dozing at times.

Here is a letter I received from Ellie's school bus attendant.  One thing I never questioned about Barb was that she was determined to take the best possible care of Ellie and that she loved Ellie far beyond the short amount of time she'd known her.  Even so, I was shocked when we received this touchingly beautiful letter from her.

Greetings from Ellie's school bus attendant.

I have thought long and hard about what to say to you Ellie (and family) as I keep up-to-date with your physical progress.  Finally last night the words came to me, and I felt compelled to share them with you.

I remember the first day Ellie rode the school bus in 2010.  Picture the scenario...a neophyte attendant and driver (both first year on bus duty) are asked to transport a little girl home.  Sadly she wasn't listed ye on our sheet, sh we had no physical address to take her to.  Ironically though, she looked remarkably similar in physical characteristics to another young female student.  That being the case we assumed she was potentially confused about her name and proceeded to take her to the drop off for the other child (not knowing at the time that said other child stayed after school all school days and was picked up later by HER mom).  So we proceeded to the other child's home, which happened to be in an apartment complex.  Several times I asked Ellie which apartment she lived in.  She would consistently reply..."I don't live in an apartment, I live in a house."

to make a long story short, we definitely were NOt at Ellie's house.  When we realized we didn't have a place to safely take her to, we were instructed to return to the school.  I remember looking deeply into Ellie's eyes as I told her this.  She studied me for a moment and a crooked half-smile poked out. "Durry" (don't worry) she said.  She then proceeded to tell me about the special language she had developed and offered to teach it to me.

I was delighted by her attitude and air of resolution.  I might not have known where Ellie was supposed to be...but Ellie knew EXACTLY where she was supposed to be...Home surrounded by the love of her family.  Home where she delighted in an almost brand new baby sister.  Home where her brother Ben (when he was in the mood) would race tot he bus and grab her backpack to lug inside.  Home.

Unfortunately the days Ellie rode the bus were far too few, selfishly for me.  I say selfishly because through Ellie I was learning so much.  I learned that though Ellie has been burdened with debilitating physical issues she has also been blessed with a keen insight and talents that she shares freely.  More importantly, I've learned your body can not restrain your mind or attitude.

I can't remember the number of times she would sense my concern about her physical state, simply look at me, smile and say,"durry".

It is said that everyone you meet comes into your life for a reason.  A day, a week, a year, a multitude of years.  The length of time doesn't matter.  What Does matter is that these people leave a handprint on your heart.  I am proud to say I have many "handprints" on my heart.  Ellie's is right there with the rest of them.

Wishing you all a measure of serenity and tranquility during this holiday season.

That Santa Claus

[caption id="attachment_3176" align="alignleft" width="300" caption="Ellie opening Christmas presents several years ago."][/caption]

Ellie is doing so much better, we are going home!  Here is what Ellie says about that, "Yip yip yarrrah!"

Just for fun, here is a blog I started, but never posted after last Christmas. 

As many of you know, Ellie was always a little freaked out by the concept of the Tooth Fairy and Santa Claus.  Anyone, magical or not, sneaking around the house while you are sleeping just was not her cup of tea.  As in many cases, Ben is the opposite of that.  Ben has talked almost daily about Santa (0nly interrupting himself to talk about dinosaurs) since he saw Santa on the Christmas Train at the beginning of December.  He would occasionally name drop that he had in fact seen Santa Claus in person on the train.  He was super excited.   You know the kind where your body can't even contain it so you have to jump up and down. 

Christmas morning, Ben raced downstairs to find his presents.  He checked to make sure Santa had eaten the cookies he'd left out and drank the special juice Ben had made.  There were only crumbs left on the plate and Santa had left a note thanking Ben for being such a great helper.

This year, Ben has been keeping an ever changing, ever growing list of requests for Santa.  At the same time, he seems a little star struck by the big man in red, unable to talk with him if he sees him. Ben helped me decorate the entire tree this year and we discussed which ornaments I had collected for him and which ones I'd collected for Ellie.  It was like a walk down memory lane.  I adore our tree even more this year because of how much fun it was decorating it with my super excited Ben.

A big shout our to brilliant Brittany for her visits and Smiley book and chocolate cupcakes.  Yum. 

A big shout out to our wonderful neighbor, Kathy, for walking Ben to the busstop this morning.  Made my morning way way easier!

A big shout out to Karly for picking Ben up from school, having a playdate,AND purchasing bigger Lotta clothes in addition to the snow boots ANS snow pants.  Thank you all for making this week so much easier!!

Snow boots and soup

[caption id="attachment_3172" align="alignleft" width="300" caption="This is my nephew Dariush, does he not look so much like Lotta?"][/caption]

Ellie had sort of a rough start this morning but is doing much better now.  She has been having tremors in her right hand and her left side has not been as active as we would like.  She has been sleeping quite a bit today and in a bit of pain this afternoon, which seems to have subsided after we gave her more pain medication.  Also lots of snow in these parts right now. 

Speaking of snow.  Great big shout out to Karly for purchasing brand new fancy schmancy boots for Ben.  Hello!  I asked if she knew anyone who had hand-me-downs Ben could take off their hands and instead she went and purchased new ones.  She told me that she could shop while I could not (it rhymes so you know it is true.) 

Also a great big thanks to the stupendous (one of Ben's favorite words because I told him you can hide a "stupid" in there a word I do not particularly enjoy) Sue Zwart for her wonderful meal.  Your soup kept us all cozy today for lunch. 

AND a shout out to Wendy and Max for coming over, playing with Ben (and for Wendy putting up with all the screaming and running) AND for making us more scrumptious soup.  I mean seriously this is the perfect weather for soup and soup is one of our very favorite winter time meals.  Not only that but she dropped Ben off at the hospital on her "way" home.

The case of the missing shunt

[caption id="attachment_3166" align="alignleft" width="300" caption="Who is this baby with Elmo??"][/caption]

Yesterday was a wild ride of a day.  We had a care meeting with all of our doctors to discuss future plans.  First our neurologist, Dr. Hsu, explained how the hypothalamus controls both the body's parasympathetic and sympathetic nervous systems.  How it used to be that Ellie would be awake all the time (parasympathetic) but now Ellie is asleep (sympathetic) all the time.  Both responses are controlled by the hypothalamus.  Then our oncologist began to discuss the treatment we have pursued thus far and why we have not pursued radiation therapy.  She wondered if we wanted to discuss that possibility with the radiologist. As she was talking, I got the distinct feeling that she felt as if she had somehow failed Ellie.  I started to tell everyone how I did not feel like what has happened over the past 6 years has in any way been a failure, that I feel like everyone in the room has increased not only her life span, but her quality of life with the amazing care and love that has been provided.  Everyone got a bit weepy at that point. 

Suddenly, our neurosurgeon swept in and took a seat changing the whole atmosphere in the room.  He requested to know what had happened thus far.  Then he stated emphatically that with he felt as if Thom and I were the ones who have extended her life, that the hospital can do all they want but without family support and diligence none of that matters.  He seemed frustrated that her shunt had not been checked and ordered a quick brain MRI to check it.  He felt that his work with the shunt was not over.  He likened it to treating increased sodium and then not checking to see if the treatment worked.  It did not seem as if he felt we were near the end, as he mentioned the possibility of her living a year or two.  The mood in the room completely changed after he entered, from sadness and resignation to hopefulness and action. 

[caption id="attachment_3168" align="alignleft" width="300" caption="Elmo gets a little pushy."][/caption]

After an MRI and CT scan it was discovered that her shunt was not functioning properly, basically the 2 sides of her brain were no longer communicating.  Ellie was admitted and hooked up to the heart/oxegyn monitors where it was discovered that she was skipping breaths (apnea).  It was decided that surgery could not wait.  While in surgery one of the residents re-discovered Ellie's shunt that had been placed last December.  With all of the surgeries over the past year, the shunt had moved and was now embedded in brain tissue plus scar tissue was blocking the middle of it.  

 Today Ellie is resting and sleeping and having some difficulty moving her left side.  She did arouse when our super friend Karly just stopped by, which is what we call piming (perfect + timing).  

What I am taking from the whole conversation yesterday is that every doctor is simply giving us his/her best guess based upon his/her area of specialty, history, and experiences. 

A big shout out to my Zumba friend Jen for the wonderfully nourishing pumpkin soup, brownies and cake on Tuesday.   As I have mentioned before, she sends me breathtakingly gorgeous e-mails.  Here is a quote she sent me a while back, I love that it is from Oprah because I used to quote Oprah all the time.  "Every challenge we take on has the power to shake us---to knock us to our knees.  And yet what's even more disconcerting than the jolt itself is our fear that we won't withstand it.  When we feel the ground beneath us shifting, we panic...What I know for sure is that the only way to endure the quake is to shift your stance."---Oprah

Grabulous!

[caption id="attachment_3138" align="alignright" width="300" caption="Ellie with some of her classmates, including the infamous Izzy."][/caption]

Third grade was such a special year for Ellie, as it was the last time I can recall that she felt consistently good.  We did not have a hospital stay the entire year.  We walked to school.  At the end of the year, there was a musical concert and much to our surprise, Ellie performed with her classmates.  It was incredible. 

I think of the gift of Ellie often as I reflect on school.  Ellie's presence, laughter, creativity and courage was (and continues to be) an inspiration to me, the students and the staff at Marquette.  She helped our class come together as a kind, caring and cohesive community.  The students loved her, embraced her and wanted desperately to help make her first year in school a successful one.

I have learned from Ellie to smile, laugh, be playful and to take life on day at a time, embracing and celebrating the people I encounter.  She has taught me that life is grabulous!  Take care, Kathy Mack

A great big huge thank you to Cynthia who made it possible for both Thom and I to attend Ben's annual holiday school lunch on Tuesday.  When I asked her, she rearranged her plans to come and then acted as if I had done her a favor.  Made me feel like royalty!

For Crying Out Loud!!!

As many of you know, I am an avid Zumba fan.  What is Zumba you may ask?  It is an aerobic dance party.  Almost every time I go to Zumba, there is a moment when all thought disappears and I am simply in the moment, completely enjoying the movement and music.  Pure bliss.  It reminds me of a quote my extremely talented mother-in-law just sent me. 

"We must try to take life moment by moment.  The actual present is usually pretty tolerable I think, if only we refrain from adding to its burden that of the past and the future."--CS Lewis

Unfortunately, recently, I have had a challenging time not crying at Zumba.  I try to get it out on the car ride there, but typically it spills over into class.  I have tried wearing a hat to make it less obvious, but I may have to resort to sunglasses too.  Which may not do anything for making me less obvious.  A loud voice in my head responds to all this blubbering with, "THERE IS NO CRYING IN ZUMBA!!!"  Which is why I found this recent e-mail from the amazing Amy, my sister-in-law, so very appropriate.   

 

[caption id="attachment_3148" align="alignleft" width="300" caption="The amazing Amy"][/caption]

 One lesson I have learned from Ellie, her inspiring parents and her inspiring younger siblings is to Live Out Loud. This means you are living with your experiences on the outside of your face… letting people in to see your jilled moments, your crobbing (crying + sobbing) moments (Ellie would say I needed to practice some more), your frabjous moments (Lewis Carroll used this one for fabulous + joyous, not sure where the “r” came from). Living Out Loud allows other people to come a little closer to where you are and to share life with you. Ellie Lives Out Loud. You know when she’s jilled. She doesn’t try to hide her crobbing either.



 Recently, I’ve been browsing card shoppes to find that card that speaks what I am feeling, praying and intending for Thom, Debi, Ellie, Ben and Lotta. There is NO CARD for this scenario that I have found. (The closest candidates I have purchased and then either thrown out or sent as a belated birthday card to a different friend which tells you how specific it was … but back to browsing) I cannot do this survey of the card sections without crying. Instead of just surreptitiously wiping the tears, I’ve been tempted to cry out loud. People have grief experiences. Why do we try to pretend we don’t? Why do we reserve them for our alone times?

 Sharing each others’ lives requires a little crying out loud, and definitely, living out loud. Thank you, Ellie, for that life lesson.

 Love and tears and smiles and good memories,

Aunt Amy

 

 

The Privilege of Growing Older

[caption id="attachment_3132" align="alignright" width="300" caption="BEN!"][/caption]

I made an oversight in my last blog when I gave sole credit to Ms. Zwart for getting me a swagger wagon.  She has e-mailed me numerous times requesting I change my blog because anything she does for us is part of a team effort.  I definately do not want to get on Ms. Zwart's bad side and more importantly do not want to leave wonderful people unacknowledged.  Connie, the extraordinary secretary (assistant?) at Marquette made the phone call to the bus company and Ellie's current exceptional special education teacher, Ms. Corsi collaborated as well.  Ms. Mack has been working on creating a calendar so that people in the school community can sign up to bring us a meal or visit with Ellie (Madison readers, please let me know if you would like to be included in this).  Thanks to the whole team!!  And thanks to Ms Zwart for being so bossy. 

Speaking of Ellie (how's that for a smoove transition?).  Ellie continues to have ups and downs.  Times when she is filled with sadness and cries, even as she sleeps.  Days when she sleeps much more than she is awake.  Other times, she is the jilled person we all know and love.  Wondering if we are going to run outta crayons, talking non stop, only wanting to eat chocolate and chips.  On Thanksgiving day, Ellie sat at the table and announced how the color of the walls in our dining room makes her feel happy.  Wow. 

[caption id="attachment_3131" align="alignleft" width="300" caption="The adorable Patrick Kyle, even better than Nate."][/caption]

Laura Linney was on The Nate Berkus show (my new favorite daytime show as he reminds me of my oh so wonderful brother-in-law, Patrick Kyle).  She said that whenever someone complains of growing older, she is reminded of all of her friends who have not had that privilege.  When I hear of places in the world where 30 is the average life span, I absolutely know how fortunate I am to have reached 40.  After Zumba one day I was chatting with my buddies when I mentioned an Eddie Murphy skit from SNL in the 80s (celebrity hot tub).  They all stared at me blankly.  Then started teasing me for being so old.  I told them later that I did not feel bad for being old enough to recall the skit, I felt bad for them not getting to experience it. 

My Monkey-Bar-Gym buddy, Debra, sent this lesson from Ellie.  She claims she does not have anything inspiring to say, but I have to disagree wholeheartedly, as I think you will too...

I have been keeping up with your blog, and my heart and prayers go out to you and your family and friends.  I am very much not the right person to say the right thing, or even anything inspiring, so I will only say that while I have not met Ellie I know she has taught love at a greater level to so many people.  A love most people never even get to realize!  A love that says even if I am not with you I will always be in your heart. A love that says I love you regardless of who you are, always.

My Swagger Wagon

[caption id="attachment_3126" align="alignleft" width="300" caption="A crazy hat from Jenny."][/caption]

There have been times along this journey with Ellie that I have felt quite alone.  Now is not one of them.  I absolutely feel the love and support of a far-reaching community of Ellie lovers.  It feels like her final gift to us, this gift of love and inclusion.  From the "ellie gratitude" turkey that Ms Zwart made for us, to the hot dish Jana keeps making for us (yum), the piles and piles of laundry cleaned by my mom, the prayers from numerous sources, the delicious food arriving at just the right time (most recently from an extremely pregnant Jennifer), Mona and Lo who want to come and clean our house for FREE. 

Before giving birth to Lotta, I decied it would be fun to win a mini van.  Not just any mini van, a swagger wagon.  Then Esther decided the swagger wagon should be filled with crayons.  My brother. Kirk, decided when he wins the lottery, he would purchase said van for us.  We had great fun figurin out exactly how fancy we could make it.  I was sharing this story with Ellie's 3rd grade teachers--Ms Mack and Ms Zwart.  Ms Zwart e-mailed me later that she wished so much that she could get us that swagger wagon and that that would solve everything.  It was such a sweet e-mail, I kept it in my in box for awhile just because it made me smile to think about it.  On Wednesday afternoon, Ms Zwart and Ms Cratic came over to discuss how the school community could best support us.  One of the main challenges I have had is trying to figure out how to pick Ben up from the bus stop without leavinf Ellie at home alone.  Particularly when I don't know when she is going to be disoriented or if she would recall that I went to the busstop.  On Thursday, an excited Sue (Zwart) called to say that the bus company agreed to change the bus route so that Ben could be dropped off right in front of our house!!  I was totally and completely amazed.  Never did I imagine the solution would be so easy for US.  I was humbled that they would make such an effort on our behalf.  In my book, Ms Zwart won us our swagger wagon! 

My great, kind-hearted friend fromm La Grange, Jenny stayed with us last week.  I was telling her how I felt it wasn't fair to Ellie or my family or myself for my emotions to be so tied to how Ellie is doing.   I feel like a kite being blown in the wind.  And at the same time I do not know how not to be blown about when she suddenly becomes nonverbal or disoriented or just slowed way down again.   Jenny responded that she was amazed that I could even have such a thought.  And that simple, yet profound response allowed me to be in the space of not knowing how to do it, and knowing at the same time I could strive for this vision of peacefulness. 

The snow is gently falling outside as I sit typing this blog.  Both my beautiful daughters are sleeping peacefully. At one point, Ellie woe up to announce how happy she is.  Almost as if she could feel the gratitude emitting from me.

Embracing the Wonder

OK, so perhaps that last blog was a bit abrupt.  I apologize if it took you by shock.  I honestly do not know how to share this information.  How not to shock, even if you somehow know it is coming.  How to ease the pain, grief, frustration, or a whole mess of other feelings too.  How not to want to have the "right" thing to say.  How not to want to "fix" this thing that cannot be fixed.  Thom and I are working on allowing others to have their grief as we have been allowed to have ours.  Right now it feels as if everything has changed and at the same time nothing has changed (did I already say that?)

Yesterday was extremely challenging as Ellie seems to have some kind of stomach bug right now that caused her a lot of pain and created a lot of mess.  Ellie was extremely uncomfortable, spending much of the afternoon crying in bed.  Ugh.  My one wish for today is for her to feel better.

Huge thanks to Ms. Kathy Mack for the wonderful dinner on Sunday night and to Brittany for whipping us up a Lasagna!  I cannot even begin to tell you what a gift it is to already have food made right now.  Thanks to Karly for hanging with Ben on Friday after school and making his day funderful!  And thank you to Zumba Jen for the breath takingly beautiful e-mails.  They are even better than muffins, they are like a bar of the finest Gail Ambrosius dark chocolate.  If I have neglected a thank you, please know it is not because I am not greatful, it is because my brain is a bit foggy right now.

Here is an Ellie lesson from my Great Aunt Glenna (emphasis on "Great")

What I've Learned From Ellie

First I learned how important it is to have fantastic, talented parents like Debi and Throm.  Parents that love you and help you live life to the fullest.  Ellie teaches you about how to seize the moment, about holding someone's hand, and embracing the wonder of every day life.  Most of all, she has taught me to cope with what we don't understand. Her courage has helped me to go on zooming down the road . Ellie has the courage to do what is hardest and love without fear or boundaries.

I have never met Ellie but she is my GREAT, GREAT niece.  I have read "Sunny Days With Debi" for years.  I know she has great genes from many sources, and one source is my mother.  She would have loved Ellie's new words and understood the logic behind each one.  They would have enjoyed each other if they had ever had the pleasure of meeting. They would have bonded.

Many thanks to Debi and Throm for sharing Ellie with family and friends.  It has made me "jilled."      Aunt Glenna Burns

"You're not in trouble"

[caption id="attachment_3096" align="alignleft" width="300" caption="Budda Ben"][/caption]

We have officially signed on with Hospice Care.  This means that our doctor believes Ellie has 6 months or less.  We are now moving more into a phase of managing symptoms and providing comfort.  One of the things I have been pondering, is how can I make this time frame as amazingly spectacular as her life has been? Filled with love, humor, tears, authenticity, joy. I force myself to focus on right now and not thrust myself into the future.  A future where Ellie is no longer with us physically.  How can I allow myself to feel the weight of that and at the same time fully experience the time we have left?  I keep thinking how letting go is something we parents begin to do from the very first moment we hold our children.  There are moments right now where I do feel so connected and tuned into all that surrounds me that this seems totally possible.  Other moments not so much.

Another lesson from my dad:

I thought of another Ellie lesson that I have not yet seen anyone mention.  That is of her wonderful ability to take whatever you say and tell you that "It's OK you won't get in trouble with me".  The more I consider how wonderful that outlook is the more I am amazed at my granddaughter.  Love you dad

A Book Hero

 

Dan, Sara, Noah, Mia, Zach. Are they not beautiful? Seriously.

We are back home and Ellie had a rough evening of yucky stuff ("sucky" as Ellie would say to combine those 2 words) flying outta her body, at one point forming yet another lake here in Wisconsin.  She keeps questioning whether or not we are home yet.  And is having bouts of eeyor-ishness (gloomy sadness), probably partly because she isn't feeling well. 

Another Ellie Lesson from her stupendous Aunt Sara:

Over the last year or so, it seems more and more people are prophesying the end of the book era in favor of digital books.  I don’t think Ellie has much capacity for disdain, but I bet that idea would not leave her feeling too jilled.  Very few things satisfy like the tactile enjoyment of holding a good book, being surrounded by good books, organizing a pile of good books – finding just the right book to read at bedtime.  Ellie is a true book lover.  A lover of not only a frabulous story, but of the medium itself.  On behalf of books and bibliophiles everywhere, thank you Ellie!  You are our hero!
Love from Richmond,
Sara

 

A Love Story

Cynthia is on the left side of the photo.

Ellie is doing so much better today cognitively, we are planning on going home tonight!  This poem is written by our grabulous friend, Cynthia.  Grab a box of tissues, its a tearjerker!

For Ellie, in gratitudeWhen I walk down the hallway
I don't look in the other doors
I can't bear it

but my heart
feels a pull
toward your room
and I know that wherever
you are
is one of my homes

That is how you make me feel
my precious Ellie
At home

If I am lucky enough
you are awake
and I can gaze into your dark brown eyes
Oh, those eyes
I can see the whole world

I can't help myself
Once again, I tell you
your eyes are beautiful
and you respond
I have my dad's eyes
We smile at each other

Another time
I am lucky enough
to read you to sleep
You rest
peacefully
I turn to your dad and say
I love her
He just nods and smiles at me
He knows how true it is
How full of life and love
you make me feel

Ode to Ellie

[caption id="attachment_3071" align="alignleft" width="300" caption="Jenny and Bella Rose."][/caption]

This morning Ellie continues to oscillate between lucid and disoriented.  Not as often as yesterday, but she continues to say a sentence repeatedly that no one can understand.  Every time she says it my heart breaks a little, with the frustration of not being able to comprehend someone whose favorite thing is communicating.  Although perhaps I can take solace in that she may not fully realize that we are not understanding her. 

Another spectacular contribution to our Lessons from Ellie.  This one is from our neighbor in La Grange and our spectacular friend, Jenny (we seem to "collect" wonderful Jennifers).  She has been with us on this journey since the first day Ellie was diagnosed.  She is one of the kindest people I have ever encountered and I feel fortunate to call her a friend. 

Ode to Ellie-

I met you in Kohls,
then again in oakbrook mall,
You were just a wee thing, baby bjorn and all
And then, how strange, I heard you lived in La Grange
And how lucky for me to discover that
You lived across the street
I had never met a mother and daughter so sweet
You opened your doors to me and my Bella
And then we met your dad, one heck of a fella
( ok I'm not a poet and I never went to college)
You shared so much with us grateful Behms,
We felt love burst at the seams
You taught us some rhymes,
Shared many a book,
I fell for the Kennedys with just a look
Well, your family has grown and you've since moved away,
I can't cross the park to come over and play,
But my Ellie, I'm still inspired every day.

Ellie and the Kennedys are the kind of people that give me hope for humanity.
Warm, kind, funny, honest, quirky, look into your soul( oh and good looking) kinda folks!

Jilled

My sister had shirts made for Thom and I that say "jilled" (joy + filled) one of Ellie's favorite words.  I wore my shirt today and Thom wore his last night.  A gentleman stopped me in the hall today and said, "Hey I saw that shirt yesterday.  What does it mean?" I explained and a huge smile spread across his face as he 'got' the meaning,

When Ellie was missing home yesterday, I asked what she missed the most.  Immediately she told me her 'friends' (teddy bears and dolls).  I declared that I would bring a huge suitcase to the hospital filled with her friends.  I have set them up all over her hospital room.  I was explaining this to a nurse's assistant (NA) when she told me Ellie told her she missed her bookshelf most of all.  Hmmmm that presents more of a challenge.

MRI and EEG performed this afternoon when Ellie was really out of it, both looked good, neither explained her changed mental status.  Even talk of us going home tomorrow.  Hard to imagine with her continually changing grasp of reality.

Pretending

[caption id="attachment_3061" align="alignright" width="300" caption="Ben pretends to be a dinosaur."][/caption]

After being in the hospital for a week and a half, things out in the "real world" start to seem a bit surreal.  Culture shock.  I mean the hospital has its own time zone and language for crying out loud!  How could I not get culture shock?  Going to the bus stop in the morning and waiting with the other parents can feel mighty jarring.  Pretending I will go home and have a "normal day". Maybe watch The View or go to the grocery store or tackle the mountain of laundry in my living room.  We are walking a tightrope in in-between land where we are uncertain whether our lives will look similar to how it did before this hospital stay or extremely different or maybe somewhere in between.  Unfortunately, there are no maps in in-between land.  You have to make your own path along the way. 

Dr. Iskandar, neurosurgeon extraordinaire, stopped by this morning.  He was cautiously optimistic that because of the shunt revision we will see a change for the better over the next days or weeks.  We are getting ready to go for an MRI because when she woke up at 1pm, she was only speaking only gibberish and she was pretty agitated.  An EEG is also ordered to check for seizures.

The lessons from Ellie have been so incredible, at times, like a salve on a wound, reminding me of all the joy Ellie has spread far and wide.  Here is another one, from my Aunt Doris.

Ellie has taught me the meaning of strength. I have never known anyone with as much strength as she has. Think she passed a  little of it on to her Mom and Dad as well. God bless each and everyone of you. Love, Aunt Doris

Adding Depth

[caption id="attachment_3046" align="alignright" width="300" caption="Snuggled up with my kiddos."][/caption]

Dr. Iskandar, neurosurgeon extraordinaire, just stopped by postoperatively to say that there was lots of scar tissue around Ellie's shunt.  Whether or not this was causing all of her recent issues, time will tell. 

 



A great big thank you to superb Cynthia for not one, but two visits.  I somehow failed to mention her in a blog after her last visit, very unlike me.  I told her maybe she needed to be more "memorable" for me (ha).  She said that next time she'll come running down the hospital hallway naked screaming, "I'm in my birthday suit because it is someone's birthday somewhere!"  Last night she brought us wonderful Thai food that saved my life when I was hungry and needed to run into the kitchen to grab something quick like while Ellie was once again npo (nothing per oral, fancy medical way of saying you can't eat or drink.)  When Cynthia came by last night, Ellie was also npo.  As she stepped into the room, she started to discuss the food she'd brought and Thom and I were both like, "NO don't say the four letter 'F' word!!!"  (food) 

Here is another Ellie lesson, from our awesome friend, Jennifer.

[caption id="attachment_3045" align="alignleft" width="300" caption="Jennifer is sitting in front of the pink curtain."][/caption]

How in the world do I put into words what I have learned from Ellie?!?  It is more a shift in perspective on life in general than an individual “thing” learned.  Not to worry what other people think, to be happy in your own skin, doing your own thing, that might be the biggest one.  To try to have fun and be joyful every moment of the day, no matter where you are or the situation you are in, because wallowing in self pity certainly won’t help anything.  To appreciate every day, to appreciate every person who crosses your path, to just be filled with more gratitude in general.  How she always wants to make others happy by spreading her hugs around -- not many people, kids especially, are selfless like that.  Hearing her talk about the different versions of hugs and the huggle snuggle shop, back in the day when she was really into different kinds of hugs and putting out hug fires.  I have great memories of spending LONG weekend days at your house, hanging out, before I had kids of my own, and I know that I’ll never be able to do that again due to my own family life now, but there are definitely times when I miss spending that kind of time with you and your family.  Being her friend (and being your friend, and your entire family) has added a depth to my life that was not there before and for that I am eternally grateful.

What Really Matters

We are once again scheduled for surgery at 3pm.  Well first we were scheduled for 11am.  It is sort of like being at the airport watching your flight departure time change.  But hungrier. 

Here is another Ellie lesson from my awesome friend and Tiara coach, Amy.

So…strangely enough, I haven’t met Ellie in person. And, given that, she has still taught me so much. The thing that immediately comes to mind and maybe doesn’t sound terribly juicy, yet it’s HUGE for me is that Ellie reminds me that it’s more important to have fun and be joyful than it is to get it right. I think about her making up her words. And how – so often – I can’t allow myself to just have fun and go outside the “rules” and let loose.  I love how she is focused on what really matters….being jilled.

 

Given

Surgery kept getting pushed back today until it was canceled for today.  Probably try again in a few days.

This Ellie lesson is from Ellie's stupendous Aunt Sara who personifies grace.



[caption id="attachment_3036" align="alignright" width="300" caption="Sara and my nephew Zach."][/caption]

What a road you and Thom are walking – and yet, the gift is that you live with the peace, clarity and simplicity of lives focused on truly living each day you are given.  Thinking of how much I admire you both, I was reminded of this poem by one of my favorite thinkers.



Given

We travelers, walking to the sun, can't see
Ahead, but looking back the very light
that blinded us shows us the way we came,
Along which blessings now appear, risen
As if from sightlessness to sight, and we,
By blessing brightly lit, keep going toward
That blessed light that yet to us is dark.

Wendell Berry, Sabbaths 1999: VI

Love, tears and respect from Richmond,
Sara

The Best Kind of Love

More adult confusion here, this time about how long to wait after eating for sedation.  Surgery may be moved back to 4pm. 

All of the Ellie lessons being sent to me are so fabulous, it is challenging to choose which one to include.  Here is one from Ellie's Grandmama and Grandpa (Thom's parents):

This has been a roller coaster ride I wish that none of us in this family has had to ride.  To have watched this sweet child, who never did anything to anyone but be sweet and creative in her special little world, have so many problems and go through so many "procedures" and surgeries.  But through it all, we have all gained strength to go the next step because of one Thom and one Debi who loved on this child as God loves her.  We could learn their patience and their good attitudes... even if they were added for everyone else's benefit in addition to their own.

Ellie has taught me that creativity can come in word forms.... so far beyond what they rest of us can understand or imagine.  I feel I am a better person to know this sweet angel.

With much love from Ellie's Grandmama and Grandpa,  Nancy and Gene

And a bit more from another e-mail that I am sneaking in...

I was talking with a friend this morning and her comment was how lucky Ellie is to have a mom and dad who love her so much.  I couldn't even speak as I have said many times NO ONE could give as much love to this child as her mommy and daddy are doing.  Ellie may not have been able to experience some of the stuff of other kids, but she has missed nothing.  She got love.... the unconditional Kind.. the best.

I need another box (of tissues).

Please hug her for me.

Love, Nancy

Showing Some Color

[caption id="attachment_3021" align="alignright" width="300" caption="Laghing Ellie"][/caption]

Clarification that YES, we still are in the hospital, just not in the PICU, but instead on the oncology floor.  Yesterday was filled with confusion (for the adults even, not just Ellie) over what would occur today.  First we were going to have a care meeting with all of our doctors to figure out a plan for us.  Then, we met with Dr. Iskandar he explained that he really felt that there was a chance that her shunt is malfunctioning slightly and causing some of the problems we have been seeing.  We agreed to the surgery (a "minor" brain surgery called a shunt revision) which will be performed today at 2:45. 

Ellie has been so much more lucid over the last day.  She was even able to eat on her own and go to the bathroom out of bed.  Today her sodium is a bit high, so we are working to correct that. 

Yesterday, I was feeling a bit crazy weepy and thought it would be good to have a visitor, I immediately thought of our excellent friend Esther.   Esther then texted ME as if she had gotten my mental text message to ask if she could come for a visit.  As I have mentioned in previous texts, Esther previously lived in Memphis and she has met my entire family.  She has become an honorary member of my family.  Here is what she wrote about Ellie:

[caption id="attachment_3022" align="alignleft" width="300" caption="Esther and Jonathon at a Ben birthda party."][/caption]

I have been thinking a lot about Ellie especially lately.  Before I go to sleep and when I wake, I think about her and say a little prayer.  In my mind, I go through all my different memories with her.  From when I first met her in Memphis to living near her now in Madison, Ellie is definitely unique – set apart from other children in her own way.



 Ellie has taught me a lot over the past few years.  Sometimes when I leave her, I get so humbled and encouraged by her to the point of tears.  One of the main moments that stick out in my memory was the morning I was visiting her before one of her previous brain surgeries.  Dressed in my usual black attire and with a heavy heart, I approached Ellie’s bed in the pre-op area.  She was into giraffes at the point and I brought one for her.  When she saw it, she shot up in bed and said, “No waaay!” and I said “Waaaay!”  This girl was extremely jilled right before brain surgery!  She always manages to make ME smile even when she is going through the roughest times medically.

 Agogo was there too right by her bedside with a cheerful smile.  Somehow we got on the topic of favorite colors.  At the time, I think Ellie was into bright yellows and oranges.  She couldn’t pick just one.  Agogo I think said she liked pink.  Ellie then asks me, “Esther, what is your favorite color?”  I naturally responded “black” as I appropriately was wearing.  Both her and Agogo just stared at me.  You could literally hear a pin drop.  Ellie asked me, “Why?” as if black couldn’t be anyone’s favorite color.  I remember the look in her eyes clearly.  When Ellie talks to me, she looks at me as if she is looking into my soul.  At that moment, I just felt such heaviness in my heart and had the urge to pour out my soul to her.

 I joke about this moment with friends but in actually, Ellie has made me see “color” in my life and those around me.  Whenever Ellie came to visit or I went to visit, she would be brightly dressed so proud of her outfit and how it made her feel.  She always exudes happiness and it is definitely reflected in her outer appearance.

 My wardrobe is still filled with a lot of black clothes but I have to say, I have been buying colors now to the shock of many friends.  Like Ellie, I too want to exude happiness to others.

[caption id="attachment_3020" align="alignright" width="300" caption="Esther, her son Jonathon, Kaitlyn & her dad, Mark"][/caption]

 

 It’s funny but maybe this is a small reason why Ellie loves peeling crayons.  Colors shouldn’t be hidden by paper covers.  They need to be naked and shown in all their glory.  Don’t get me wrong - I am not ready to streak through the streets but I definitely have made one step towards taking off a "layer" and showing some color.

 To Debi & Thom, thanks for letting me into your family and into Ellie’s life… even if Ben still thinks I am Jennifer.  He can call me whatever he wants, I’ll take it!

 Love you guys.

Esther

And here is a text Esther sent after her departure:

Ellie was doing a little repeating while u were gone.  I said to her when she smiled, "I love ur smile, u r so beautiful".  She repeated this sentence back so I thought she was repeating but then she added "Esther" at the end with a smile--that was the highlight of my day.

 

More Ellie Lessons

Ellie is doing so much better today, more lucid than disoriented.  She even started eating again!!  Another tearjerker, watch out (that's a good watch out, as Ellie would say).  This one is from my great Zumba friend, Jen.

Debi,

My hope for you is that you are inundated by inspirational words from novice authors that upon their delivery, provide you with instant strength to nourish you and your family while you continue on Ellie's journey.  

By your mother's suggestion I was compelled to write to you about "The Life Lessons of Ellie."  As you are well aware, I have never met Ellie in person - I know her through you - her "Inspirnomenal" (Inspirational + phenomenal) mother. There's one of Ellie's life lessons - I will never see the english language the same again. I will continue to see it through "The Eyes of Ellie."

I had this urge to try to fit the word "Little" somewhere between the quotation marks of "The Life Lessons of Ellie."  But when I tried to apply "Little" in between the quotations, I quickly realized that Ellie or anything about her is not little - in fact "Ellie is Epic."  

[caption id="attachment_3006" align="alignright" width="300" caption="Thom's favorite photo of Ellie"][/caption]

Ellie's spirit is Epic.  She is as infectious as laughter - I see her as "The Ellie Movement." Her far extending reach - has even touched the lives of people she has never met - such as myself.  I continually aspire to be a better person because of what Ellie emulates in her life. "Ellie's Optimistic Attitude."  Her life is not to be measured by her young years - but the greatness of which she is living those years, her courage is extraordinary.  When you think about living large with Ellie - it might be sitting down with a large bucket of crayons peeling the wrappers off of every last one of them.  All of a sudden everything in my life gets flipped around - what once was large on my never ending life list - is now small and vice versa.  Thank you Ellie for reminding me of that lesson.

Ellie exemplifies everything that is good in this world. She brings out the goodness in others.  I remember you Debi telling me that you didn't want your family and Ellie's illness to be used as a standard measure that people use in comparison as a reminder of how fortunate they are because of what you've gone through with Ellie.  I see it another way.  I think that your family subliminally challenges all of us to "Measure Up."  To rise up to do better, to be a better person. It is a choice that Ellie and your family makes every day to live your  lives with dignity, gratitude, integrity and the utmost grace.  Where nothing is taken for granted. Where there is appreciation for everything.  To live in the moment - grabbing a hold of that moment - hanging on tight to that same moment - not knowing what that moment may bring.  All done with huge amounts of hope and faith. In other words taking "The Ellie Challenge".  

I believe that Ellie has left an "Indelible Ellie Imprint" on my heart and with out a doubt the hearts of others that have had the fortuitous opportunity to be a part of Ellie's life.  What a gift.  I will be forever changed because of Ellie.

I'm hoping you can feel the abundance of love being sent your way. Know that you are not alone.  Wrap yourself in the good thoughts and feelings of Ellie.

Jen

The most beautiful sound

[caption id="attachment_3001" align="alignleft" width="200" caption="Ellie in third grade."][/caption]

Last night, as I was saying good bye to Ellie, she said as clear and sweet as could be, "Good bye mommy", it was the most beautiful sound I've ever heard (outside of Ben and Lotta laughter, of course.) 

Today, once again, Ellie has been in and out of it.  It is like an on-off switch now her being in and out of it, her transitions are so abrupt. 

The Ellie lessons have started arriving.  I won't give them to you all at once, because that they (at least for me) produced an extremely ugly cry.  Here is one from the totally brilliant Brittany.  (May I suggest having a big box of tissues handy?)

Hey Debi :)

[caption id="attachment_3000" align="alignright" width="300" caption="Brilliant Brittant and Ellie."][/caption]

So I don't even know where to begin on things that Ellie has taught me. Other than the obvious, to always look on the bright side of things, Ellie has taught me to be so appreciative of everything around me. She has taught me that everything in life is a treasure and should be treated as such. I have gone back to reading more and more children books myself because they have so many amazing lessons in them, even for adults. It really is the little things in life that make life worth living. But the main thing that Ellie has taught me is that angels really do exist. My mom has called me angel my whole life and I have always been told by her that angels are all around me. She always used to tell me, "Don't drive any faster than your angel can fly," and that there was always an angel watching in on me. I have an angel, big or small in every one of my rooms in my apartment. I feel like that keep me safe. The first time I was going to meet Ellie, Ms Zwart told me that I would never meet anyone in my whole life like Ellie. After meeting Ellie that first day, her 9th birthday, I realized I would of course never forget meeting my first real life angel. Therefore, I have never been able to leave her life or the lives of you all, her incredible family. God couldn't have chosen a more perfect family and a better mom to decide to give one of his very own angels to. She is just the greatest person I have ever met in my life. :)

LOVE YOU, Brittany

 

'

The begining of the end..or maybe not

Every so often, something will happen that feels like the prism of my life has been turned.  All the shapes are suddenly different.  Nothing looks the same.  That is how I felt when Ellie was diagnosed with a brain tumor.  And that is how I felt yesterday. 

Our neurologist, Dr. Hsu (pronounced "shoe") came by yesterday.  Our doctors here are so spectacular that they often will stop in just for a visit.  I told him how the Dr. Hsu in the PICU(same name, weird, huh?) called this "disease progression" rather than "recovery" as our Dr. Hsu had been.  In my mind, I expected that our neurologist Dr. Hsu would tell me why he felt all of this was part of Ellie's recovery.  Instead, he went "off script" and told me that all of the things we are seeing now are signs of the end of life.  In my head, I hoped that I was the only one imagining this as the "end", that later on, friends and family would laugh at how dramatic and emotional I had been at this time.  Maybe I am just feeling emotional because I am flooded with post pregnancy hormones.  Dr. Hsu said that our main doctors were wanting to sit down with us and have a discussion.  Being "at the end" feels similar to being "at the beginning" of a child's life in a strange way.  The anticipation, what will it be like?  How will our lives change?  But in some ways the opposite, too.  How would it feel not to have this big thing (brain tumor) that our lives virtually revolve around suddenly gone?  Will I have a love big enough to let her go when it is time?  When she is gone, do I still get to say I have 3 children?  Of course my mind has been trying to prepare itself for this news for years.  I have felt as if we were living on borrowed time for quite some time.  We have been so fortunate to get to spend 10 years with this little angel. 

Today Ellie was really out of it--repeating everything someone else would say, or becoming completely nonverbal.  Then Ellie's grabulous 3rd grade teachers stopped by and it was as if a flip was switched, she was suddenly "back"--talking about books, making up words, telling jokes.  It was astounding!!!  Dr. Hsu came back inyo our room to say that he had received an e-mail from Dr, Iskandar (he is outta town) stating that he absolutely believes a shunt revision will improve Ellie's condition.  That has been the roller coaster ride around here!   

So my mom had a grabulous (great + fabulous) idea to give a "shout out" to all of you to send in the lessons you have learned from Ellie and I can share them through my blog.  If you feel so inspired, e-mail me your stories, ideas, comments, songs, poems to debibetsi@yahoo.com.

Lotta laughter

This week, with all of its craziness and uncertainty, Lotta laughed for the very first time.  How strange the contrast of Lotta gaining skills each week, while Ellie loses hers.  I was pondering how much Ellie is like an infant right now.  Yesterday, I inquired whether Ellie was feeling cold.  She responded with, "What is cold?" Which gave me pause.  How do you explain "cold" to someone with low body temperature? 

When I first arrived at the hospital today, Ellie was very out of it, not even really responding to questions.  Now she is much much closer to her baseline--even telling the nurse she was feeling happy.  She just made up a word, "peal-ile" for a pealed pile of crayons, she even laughed at her funny word.    When I told her I was writing a blog, she wanted me to tell everyone she is feeling jilled and is funderful.

an "ellie lesson"

[caption id="attachment_2797" align="alignleft" width="300" caption="Ellie right after birth, looking wise already."][/caption]

Here is a super sweet e-mail my Dad wrote, which I am sharing without his permission (hope that is ok, Dad! I thought I'd let you help me write this blog.)

"I went to the dentist today and thought I would have to go back for extra work as I had been a bit tardy in dentist exams the past few years.  I got xrayed and cleaned and then was told I was all set and to come back in 6 months.  I said "I'm so happy" just as I have seen Ellie do.  I told the receptionist I was having to restrain myself so I would not break into a joyful dance.  What a great influence Ellie is.  Love dad"

and isn't that exactly how Ellie would want to spread her joy?  It just brightened my day to read it and I hope it brightens yours too.  Then, as Ellie says, we'll have "galloping happies". 

Ellie slept all night last night and her sodium is back in the normal range.  During physical and occupational therapy this morning Ellie was much more lucid than she has been in the last couple of days.  It was so amazing to have her "back".  We were physically moved to the oncology floor.  Alas, the lucidity did not last.  This afternoon, she is back to not knowing what she is doing or seeing.  Sort of in her own world, where she is back home playing with her books and peeling crayons.   

Awake Beauty

There are certain moments where I just feel so heavy like I can't continue on.  Walking by a room in the PICU, I saw a mother holding a baby younger than Lotta, gently stroking her baby's head.  She was fully suited up with a mask on.  It made me want to weep.  But then I feel like if I start weeping, I will be unable to stop.  I might just melt into a pool of butter on the floor.  Other times I can turn it off and not feel so emotionally at the edge.  Then I think of the times when Ellie feels like she cannot get out of bed, and I remind her that if she says that she might believe it.  And I remind myself that I absolutely can do this and I will do this and one day I will look back on this time and be amazed at what we were all able to pull together and do.  Right now, in the middle of all this, it feels very messy and dramatic.

This morning as I walked up to Ellie's room, the fellow was finishing up.  He said that his conclusion was that the symptoms we are seeing now is merely "disease progression."  We have explored every avenue and have done everything we can do for her right now.  He recommended that we move to hematology/oncology service. 

Our neurologist however, is convinced that Ellie is still in recovery mode from 4 major brain surgeries and chemotherapy.  He thinks that the change in cognitive function may be due to lesions in the frontal lobe (the part of the brain responsible for rational thinking) from her previous surgeries.  He also thinks some of the fluctuations in her heart rate may be due to the second incision site (at the back of the head, near the brain stem),lesions to that area of the brain. 

Ellie is back to being awake for days on end, which seems appropriate after being asleep for days on end.  She had a hard time coming out of the anesthesia yesterday after her MRI and was doing some heavy duty hallucinating afterwards.  This morning she has not been talking much, just mostly staring, as that is about all she can do with this level of exhaustion.  Her heart rate is again fluctuating between the 40s and 50s and occasionally dropping into the 30s (that is when I get nervous).  Her heart monitor is on silent mode because the alarm is pretty much constantly beeping.

ch-ch-ch-changes

[caption id="attachment_2959" align="alignleft" width="300" caption="baby ben"][/caption]

ellie's sleeping beauty turned into wakefulness.  her low salt turned into high salt.  her body temperature began to fall, bringing her heartrate with it.  she has been much more consistently disoriented today.  she kept thinking she was at home, then becoming extremely sad upon realizing her whereabouts.  the mri was finally completed after some initial delays, have not heard back from anyone the results.  ellie's body temperature started to drop which seemed to be bringing her heart rate done with it.  she quickly warmed up, but her heart rate has remained on the low side (right now in the upper 50s and 60s).  lotta does not wanna blog anymore right now.  gotta go bounce and walk.

Sometimes these "spells" are tricky

[caption id="attachment_2954" align="alignright" width="300" caption="Ellie at the hospital in Chicago."][/caption]

Ellie did not sleep last night, making up for lost time I suppose.  She is definitely more awake today than yesterday.  She continues to have moments of disorientation and loss of vision.  The neurologist (Dr. Hsu) suggested that because vision is processed in the back of the brain, perhaps the signal is getting interrupted somewhere along the way.  There are vision tests that can test how long it is taking the signal to travel.  We will be doing a full brain MRI (she'll be sedated as it takes 45 minutes to an hour or more) to get a more accurate view of her brain.   Right now Ellie is peeling and breaking crayons in bed.