The Dirt on Ben

At last month's Moth, the topic was Dirt.  Here's the story I told, which I didn't feel went as well as I'd hope (I froze on stage), but I thought I'd share the story here.  Ben had asked me to tell a story about him (Ellie always seems to make it into my stories..)

When my son could barely walk, I discovered him pretending to throw up in a stack of pink bins in the hospital.  He’d witnessed his sister using those containers for just that purpose so many times.  Even at that young age, he had had plenty of experience with the dirty, messy side of the hospital.   His older sister had a brain tumor, so he was in and out of the hospital all the time.  And at that point, he just thought that’s what you did when you saw one of those buckets.  It was his normal.  

From the very start, Ben experienced hospital life.   For example, there was the time I was nursing newborn Ben in Ellie’s hospital room.  Suddenly, her anti seizure medication relaxed Ellie so much that she stopped breathing.  The room filled with responding medical personnel.  When they had Ellie stabilized, one of them surprised, said “oh, you are nursing!”

Honestly, it was easy to ignore Ben, he was so healthy and vibrant, compared to all Ellie’s medical issues.  I mean how do you even compete physically with a brain tumor?  When Ben was 4, or maybe 5, he gave it a really good try when he had 8 cavities, plus strep throat PLUS Lyme’s disease.  THEN, he had an allergic reaction to the antibiotic he was on which left him polka dotted.  I was fairly certain I would win “worst mom of the year” medal that year.  Even right now they are competing as Ben asked me to tell a story about him, because somehow Ellie always sneaks her way into every Moth story I tell.  

During another hospital stay, Ellie had had a major surgery.  Ellie had been stuck in bed for a week, maybe longer recovering.  These were particularly challenging stays with a toddler in tow, as there were so many many bright, exciting buttons, just begging to be pushed.  Even though Ben was super young, just walking himself, he raced over to give his sister a huge excited hug, when he saw her trying to walk again, two physical therapists assisting her.  It was shocking that someone so young could understand how momentous it was that she was walking again (or trying to).  

And the last year of Ellie’s life, we were in and out of the PICU so many times, that Ben would pick her next room as we were departing, he was already anticipating the next stay, because he knew we would be back.  

The last few months, things became increasingly smelly and dirty, we were dealing with any and all bodily fluids you could imagine.  I knew if Ben saw or smelled anything that was happening in Ellie’s room, he would immediately start throwing up himself.  I tried my best to protect him from seeing and experiencing what was happening in there, for his sake, as well as mine (otherwise, I’d have TWO messes to clean up).  

Ben was 5 when his sister passed away.  At the end, he was this energetic little boy who would run into Ellie’s room and just scare the daylights out of her.  She would scream upon his arrival, not expecting his visit.  At the time

I thought of him as all caps BEN! With an exclamation point.  I desperately wanted him to remember how much Ellie loved him and not just her screaming for him to leave her room.  I wanted Ben to remember how Ellie always called him her best friend and how lucky she was to get to have a brother, whom she lived with, as her best friend.  How convenient is that? And I realized after Ellie died that the reason Ben’s favorite letter was “E” was because it started his sister’s name.  

Ben is now in Middle School, an age Ellie never reached.  Whenever there is a concert at school, it is always a bit shocking seeing all of Ben's classmates now, older than they are in my head.  And every time I walk in and feel weepy, and just cross my fingers they will play a sad piece that I can cry along to. A song so sad, I could look around me in astonishment to anyone NOT crying because, what are you a robot?  Every time, as I walk in to find a seat, Ben will spot me and start waving his hand wildly.  Instead of pretending he does not have parents, like his classmates, he just full on owns it.  It always makes my heart soar with love for his bravery and willingness to be who he is regardless of who he is surrounded by.  I once asked him how having Ellie as a sister impacted him, he said he felt like it made him kinder.  I have to agree, he has excelled in the kindness department.

Last week,  I volunteered for the Middle School.  One of the teachers stormed out, upset by a student.  Because apparently some of those middle schoolers can be real a-holes (I’m quoting here).  I offered her water, because that is recommended as helpful in any situation.  We started chatting and she asked who I was, and as soon as I said, "Ben Kennedy's mom", her whole face lit up.  It was as if just hearing his name, made her  feel as equally happy as she'd felt unhappy just moments before.  Which, of course, made me tear up.  That guy, somehow, has found a way to shine and jed (joy spread as Ellie would say) even in Middle School.  Somehow he was able to take all the messy, dirty, chaotic, neglectful parts of

The Gift of Not Giving

A few weeks ago, Ben's teacher told me how they were so impressed at a drawing Ben was working on.  He had explained to his teachers how the train he was drawing was taking items to the "poor" people.  His teachers were way impressed with how generous this was.

Right after that, we took a sojourn to Walmart.  I "paid" Ben for this trip to Walmart with a tiny Lego set.  It was the most exciting part of his weekend, even more exciting than the Wish Walk that Sunday.  As we were leaving the store, we came across a humongous jar (taller than Ben even) with dollar bills and coins in the bottom.  Ben, who has been pondering ways to make money, inquired what this money was for.  I read the sign and explained that it was for a children's hospital.  Ben scoffed.  He was appalled.  He said, "I would NEVER give money to them."  In that moment, I was tired and hot and possibly slightly hungry and was working hard to get us out of the store.  (I can only tolerate so much of the Walmart vibe, I don't know why, and particularly this Walmart which is a bit run down.)

[caption id="attachment_4276" align="alignleft" width="225" caption="Ben in a tree on Capital lawn"][/caption]

At first I felt as if I should explain to Ben why it might be a kind act to give children in the hospital money.  Then I realized that his experience of Ellie being in the hospital was not something that was bad, that we needed help with.   Coupled with that is how much fun Ben always had at the hospital, it was a place of total abundance, why would you possibly give more money to that?  There was a kitchen stocked with tiny, kid-sized cereals, milks, juices, bagels.  Free dinners with yummy bread sticks were provided for us frequently.  There was an Ice Cream Cart on Tuesdays.  To top it off, when he went to sibling care he was showered with love and attention and lots and lots of craft/art projects.  Plus he witnessed all the gifts, toys and blankets, given to Ellie.  He was scoffing, because from his experience this was the LAST place that needed more money.  It filled me with appreciation that this was his take-away from the hospital, rather than a much more dismal, dreary, sad picture.  Suddenly something that initially felt like a "problem" transformed into an "ah-ha" moment.

I lean towards the spring color group

Today is Thom's birthday.  As Ben exclaimed last night, "Can you believe Daddy is younger than you?"  To which I replied that it was quite amazing, I seem so youthful, don't I?  When he mentioned this the first time, I explained that I am a "cougar" and he really liked that, seeing as how he enjoys predatory animals.

Today is also the day, 10 years ago, that Ellie had her first brain surgery.  (If you are just joining us, it was an emergency, she was on the verge of brain damage.)  Betsy C., Thom, and I sat that long day together, wondering what the future would hold.  It feels so strange to be that future we were contemplating then.  I feel so fortunate to have had both Betsy and Thom with me all along this journey.  It would not have been as jilled, meaningful, wonderful without the two of them.

This month I am participating in a Tiara teleseries about self-compassion.  Here is an e-mail I sent my group yesterday, "The pain I noticed when I sat for a moment was desperation.  YUCK!!!
Desperation does not look good on me.  (Not with my coloring).  This feeling of desperation to see Ellie,
feel her, smell her, touch her is so insistent.  And so highly uncomfortable.  I
find myself running to my every-day-is-an-emergency dark chocolate stash because honestly I feel if I sit
with that desperation, that wistfulness, I will fall into a well of despair.
All those never agains keep piling up--never again to walk together, go on a
"date", read a story, pick out an outfit...(Am I sounding dramatic?)  I have
never wanted something so much, so badly that I cannot have.  I really hate it,
which sort of seeps into hating myself."

Here is what my fabulous friend, Amy, wrote back, it helped me to look at this yearning a bit more compassionately.

You’re an inspiration…a mommy role model for me. I still marvel at how you can
so easily flow through your day with Lotta in your arms or strapped on or in
your lap. I’ve seen you two be so physically and emotionally connected. Ah…I
just created a parallel in my mind – don’t know if it works for you – yet, how
do you let go of your physical connection with Ellie when you did such a good
job of being in tune and connected with her when she was physically
here?

I love how she makes me sound like Sacajawea, strapping my little papoose on and taking a little jaunt across the continent.

 

 

Fishing

Maya Angelou told Oprah that it is not time that heals all wounds, but what you DO with that time.  Along those lines, we have decided to participate in the first ever Madison Make-A-Wish Walk on Sunday, September 25 (www.wisconsin.wish.org).  Since we did not go with a funeral/wake, this would be an opportunity for anyone in the community to join us in celebrating Ellie's life. 

Just wanted to give an update on our fish fund, thus far we have raised $954!!!  That is almost 2 fishes, which as you may or may not know Ellie preferred things in a set.  Ellie's Grandad bought a fish outright and I heard it through the grapevine (my sister) that a Memphis friend did the same through the hospital website.  Geez louise we practically have a school of fish, maybe they'll name the whole wing after Ellie.  We will bring the collected checks to the hospital on February 2 when we are having a reception for Ellie to honor and appreciate the hospital community.  Please note that your check will not be cashed until February 2nd.  (February 2nd is Groundhog day--the day we predicted Ellie would be born mostly because we adore the movie Ground Hog Day.  In typical Ellie fashion, she arrived a week earlier.)  The display at the hospital will not be hung until all the remaining fish are purchased, when we checked there were still over 100 fish left.

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.

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

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.

 

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.