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

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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.