Doing a 180

As I was driving through the snow to the Y (formerly known as the YMCA), the Phil Collins song, You'll Be in My Heart came on the radio.  I realized that this was one of Ellie's songs, from when she was in utero.  I called it her fetus theme song.  As I started to turn left, the car started to turn more left-ish than I had intended and I ended up facing the opposite direction than I had been previously traveling, finally coming to rest at the stop sign.  The truly wange (weird strange) thing was that I had no doubt in my mind that I was going to be absolutely fine even in the middle of the spin out.  It felt as if I was in an Ellie protected bubble.  (Reminded me of the time Ellie fell down the basement stairs and ended up completely and inexplicably unscathed.) I truly felt her presence with me.  Protecting.  What a 180 that was from the end of last week.  How suddenly and unexpectantly things can change.  (I also felt as if that spin out raised my heart rate enough that a workout might  have been redundant.) 

Later, as I was completing my workout, I suddenly had an incredibly strong urge to stop my workout and go retrieve Lotta from Child Watch.  I convinced myself to stay and finish the last minute.  As I approached Child Watch, I could hear LOUD crying.  It was Lotta.  The child watchers told me she'd just started a minute ago.  She was completely fine and then suddenly completely not fine.  Like a light switch. I told the workers how I had actually sensed it.  Just when I think I am getting better at following my intuition, I then find another opportunity to do so. 

I guess, ultimately, I felt incredibly connected to both my daughters today.  Amazing.

Moises (mouth noises)

[caption id="attachment_3539" align="alignright" width="300" caption="Madeline, Tamar, Izzy and Ellie"][/caption]

Ellie's wonderful schoolmate, Izzy, wrote the following memories about Ellie.  Thought you would all enjoy reading what she had to say. 

The first time I saw Ellie I knew she was going to be a good friend of mine.  I loved her great personality, her outgoing clothes and the great words she made up.

We met the second day of 3rd grade in Ms. Mack's class.  Everyone always wanted to be with her.  What I learned about Ellie was that she liked being able to finish a  book, interacting with people, giving hugs and spending time with her friends.

In 4th grade she would always ask if anyone could read with her but we would all be either reading or finishing up work.  So she got upset if no one could read with her.  Then Ms. Pettit would go to Ms. HW's class to see if anyone there could read with her and usually they could.  When I got to read with Ellie she would always say, "keep reading, even if I fall asleep."  And when we couldn't finish a book she would say, "I'm sad".

Ellie had things called moises, "mouth noises", but she didn't like when we had to tell her that she had to be quiet in the hall and that she couldn't make any more moises right now.  But that just led to crying I guess.

She fell asleep in music class.  I can't blame her, it is boring.  She loved to make up songs.  She hated loud noises and most of all she hated FIRE DRILLS!  She would cover her ears and say, "it's too loud."

Ellie was a really good friend and she is still with me wherever I go. 

Birthday Wishes

On Wednesday, Ellie would have been 11.  Ellie was born at 12:01 pm (12+1=13).  The school had a luncheon for all students and staff who wanted to come and remember Ellie.  As I walked to school, I felt sad thinking about how Ellie and I would never do this again.  Then I laughed at myself because Ellie hated walking.  Once she was diagnosed with hypothalamic obesity I was hardcore about walking her.  Even through snowstorms (some may have even called them blizzards).  Then I thought of how last year I asked Ellie what kind of balloons she wanted for her birthday, she responded that she wasn't that interested in balloons.  Nevertheless, this was our tradition to have the number of balloons as the age the child was turning.  So I forged ahead.  And I wished that Ellie were here this year to tell me to forget about the balloons.  My super friend, Cynthia, released 11 balloons in Ellie's honor. 

[caption id="attachment_3526" align="alignright" width="300" caption="Ellie moments after birth."][/caption]

As I was contemplating Esther's e-mail from a previous blog, I thought about how Ellie was pure love while she was here.  It was "too late" even while she was here, she did not have to die to experience that.   My sister commented on how Ellie would look at those around her with eyes filled with such love and appreciation, as she had never seen before. 

I just finished reading condolance cards from the students of Marquette.  They were sweet and funny and so sincere.   Here is what one of the students said, "I know it must have felt so horrible for Ellie, knowing she was going to die soon, knowing she wouldn't get to be an adult and be whatever she wanted to be when she grew up..."  Reading this made me literally feel sick to my stomach (maybe it was the big lunch I had just consumed but still).  The hospice counselors suggested we tell Ellie she was going to die soon.  Their recommendation was based on their expertise in grief counseling.  Our decision was based on our expertise in our family.  We took their recommendations into consideration and decided which ones worked for our family and which ones did not.  We decided that for Ellie telling her was not the best course of action.  Ellie never talked about what she would be when she grew up.  Ellie lived in the moment.  We did not feel that this recommendation was based on an intimate knowledge of Ellie herself, but a recommendation that is maybe made to everyone as a general rule.  I know that in many cultures around the world, the patient is never told if they are dying, whether they are old or young.  We wanted Ellie to feel peaceful and at ease her last moments here with us, not upset and worried.  We did not see what telling her would gain anyone, especially her.  So will someone please tell Ariel at Marquette so that she will not feel so worried?

$247.82

[caption id="attachment_3508" align="alignright" width="300" caption="Jennifer and Rachel at birthday party #3 for Ellie."][/caption]

Our Go Fish fund is up to $1875.82!!!  Plus the fish that was bought outright from the hospital for $500.  Amazing.  We are overwhelmed.  Will let you know next Wednesday what our grand total is.

Here is a letter from my brilliant, funny, amazing friend, Jennifer, that I wanted to share with you all.  I just love the wisdom her children brought to the whole

When I heard about your request for contributions to dedicate a fish at the hospital in Ellie's memory, I was moved by how fitting at tribute it seemed.  I knew I would want to contribute and shared your plans with a few people close to me.  My friend, Faith, also wanted to contribute and there's a check from her enclosed.  Also enclosed is a check from the McKeags and, as you can see, it's for an unusual amount.  Wait until you hear why.

On one afternoon I told Kate that Ellie had died.  Kate doesn't remember meeting Ellie, but I told her about the time we all were together at Betsy C.'s house and how she nibbled on Ellie's chips and how she watched Ellie with her books.  It was a good talk.  I told Kate about the fish memorial and Kate said, "That's the perfect thing for me to buy with my money."

Kate always manages to find coins around the house and saves them in her Tzedaka box.  Tzedaka is Hebrew for charity.  Usually people put money in a Tzedaka box when they notice their own blessing and then they can share that charity with others when the time arises.  Kate finds everything a blessing and puts all her money in her Tzedaka box.

We tipped out the money from the Tzedaka box and found that it contained $22.82.  First I thought, "How do we have that much loose change around the house? We need to keep better track of our change!"  And then I asked Kate, "How much do you want to give to help buy Ellie's fish?"

Kate told me she wanted to give all of it because, "Mom she died.  I'm not dead so I'll get more money later."  Yep, in her own way, she captured the whole point!

Another afternoon I told Rachel about the fish memorial.  We'd already talked about Ellie a lot and Rachel was immediately excited about this opportunity.  She had already decided to give a significant amount of her Bat Mitzvah gift money to a worthy cause and she thought the fish was a perfect choice.

The money from her Bat Mitzvah is for Rachel's future--college, travel, whatever life brings her.  She talked about how it's representative of all the children whose lives are too short and who don't get to do all their families might have planned for them to accomplish.  She thought for several days about what amount she could give and decided on $200.

So, the enclosed check is for $247.82 from all the McKeags with so much love and warmth.  We hope to see the picture of the fish and know that the world was changed by Ellie's life and that it continues to be impacted by her now.

Ellie's Heaven

I have mentioned our grabulous friend, Esther many times.  First she lived in Memphis and was great friends with my sister.  Then we had the good fortune of having her move to Middleton, WI, a short drive from our home.  Ellie often talked about how lucky we were to not have to travel all the way to Memphis to see Esther.  Esther's daughter, Mia was a wonderful friend to Ellie.  Although they did not get to see eachother nearly often enough, every time Mia would be around Ellie, she would be seriously interested in whatever imaginitve thing Ellie was doing--creating words or feeling villages. Not  just interested to appease Ellie, but truly, authentically interested. 

When Ellie was much younger (maybe 5), Mia came with Esther to visit the hospital.  When she arrived, Ellie was hiding her arm under a blanket so she wouldn't have to look at the IV attached to it.  Mia kept asking what was on Ellie's arm, Ellie would respond that there was nothing on her arm.  Mia kept insisting that there was something there while Ellie kept insisting that there wasn't.  

When Esther told Mia that Ellie was not getting better, Mia cried all night long.  Proclaiming that it was "not fair".  Esther was afraid to tell Mia about Ellie's passing until after  Mia had participated in a big spelling bee.  I wanted to share the e-mail she sent me.

 

So I finally told the kids last night.  We were all hanging out in Mia's room last night talking about school and whatever and I just sensed it was the time to tell them.  Mia cried immediately and Jonathan was just silent and looked down.  Mia calmed down after a few minutes and we all talked about Ellie being in heaven and discussed our favorite memories of Ellie.  As you can imagine, there were a ton of questions. 

 

Mia said she had been praying everyday at dinnertime that Ellie wouldn't die.  Jonathan wanted to know who gave her cancer.  They wanted to know how she passed.  I explained how she was in her room with her family and surrounded by all her stuffed animals and books - everything she loved.  How she was also surrrounded by her angels and talking to them.  They were intrigued by this.  I told them how once when Ellie came over to our house, I was alone in the basement with her and since Aunt Susan once told me Ellie could see angels, I asked her.  Without any hesitation, Ellie said yes - she could see angels.

 

We talked a lot about heaven and what it may be like for Ellie.  Mia imagined Ellie entering the gates of heaven greeted by teddy bears with hearts on them opening the gates for her.  Mia believes Ellie lives in a mansion and has a room for each of her interests - naked Groovy dolls, books, stuffed animals.  Jonathan chimed in that there must be a crayon peeling room.  Mia is thinking about drawing a floor plan of her mansion. 

 

We talked about how we would see her again when we die and go to heaven.  We talked about how happy she is there without any pain and she's probably playing around all the time.  They asked whether she felt pain in dying and I told them how I believe the first thing she felt would be unconditional love.  How her life must now be full of all the love she could ever want and that in heaven, there is nothing more she would want -- true fulfillment.  I got this from a book called "90 Minutes in Heaven" by Piper who was in a terrible car accident and pronounced dead and came back after being 90 minutes in heaven.  He describes his 90 minutes in this book.  Truly amazing.  I also have seen documentaries on people who said they died and went to heaven briefly and came back and the one thing they all said (whether they were religious or not) is that the first feeling was immense, overwhelming love.

 

Mia talked about all the Ellie words, her snuggles, and something I couldn't remember - but she said Ellie used to give us imaginary things from her pocket.  She said they had a name but she couldn't remember the name.  

 

So all in all, though my kids were sad, it was a great time of sharing and talking about Ellie.  In the end, I think my kids were happy that she was happy in heaven.

 

My good friend, Denial

It is the waking up that can be the most challenging.  That first thought of the morning.  Oh yes, she is gone.  Throughout the day, I float around in a cloud of unreality.  It is helpful to not have to take it all in at once.   Denial can be a friend.  But that first jolt of wakefulness is when it really hits hard.

Before when I would hear of a parent losing a child, I would wonder how in the world they did that.  Seriously.  I had no idea.  Now that I am on this side of that equation (yes, I know I sound like a veteran after a week and a half), it is so much more colorful and complex than I ever imagined.  I imagined when we reached this point in our journey, I would be so consumed by grief that I would be unable to drag myself from bed.  I admit there are times when I feel as if I am walking through knee deep mud.  And times that I sleep in or nap accidentally.  Everything seems some how more difficult at those times.  I feel as if the bubbles I usually feel inside me have burst.  But this space is not all black and gray as I imagined it would be.  There are moments filled with blackness, but they do not consume me as I thought they might.  There are also moments filled with all the colors as I feel flooded with appreciation and life.    Everything seems deeper and richer somehow.  I imagined I would feel empty, alone, abandoned, regretful.  I do at times.  I oscillate between being excited to make plans to wanting to do nothing at all.  I may seem naive, supposing that I have gained such insights not even 2 weeks after Ellie's passing.  I may look back on this blog and scoff at myself for imaging things to be so neat and tidy and pretty once I am standing on another precipice of grief looking down into the abyss.  I suppose that is what this blog is all about, sharing this journey, hoping that my words somehow express what someone else is experiencing in such a say that the reader says, "YES that is IT!"

Just Being

[caption id="attachment_3491" align="alignright" width="300" caption="Ellie and Ben have a moment. We capture it. FINE!"][/caption]

Someone said to me recently, "You must feel so lost."  It so perfectly summed up  how I felt.  Disoriented and lost is how I have been feeling.  And then to add to the disorientation is the feeling that  many people who know about Ellie feel uncomfortable around me.  That has the unfortunate effect of making me want to help them to be more comfortable which then makes them feel even MORE uncomfortable.  "O jeez the grieving mom is trying to make ME feel better!  That is NOT the way this is supposed to happen."  It feels like people are afraid to use any derivation of the word "dead" around me right now.  No "deadlines"or "dead zones".   "Dead ends" are right out too.  Everyone falling all over themselves searching for the "right" thing to say when there absolutely is no right thing.  Yet it is challenging to give up searching desperately for that magic word that will make the grieving one feel better. 

When Dr. Hsu told me in the hospital that it seemed like Ellie was showing end of life signs, I immediately began to cry.  He stood and listened, being powerfully present.  He didn't try to convince me to feel any other way than the way I was feeling.  He just stood with me.  It was so powerful.  He allowed me to have my moment of grief and disappointment and despair.  Without interrupting.  He did not try to cheer me up.  He did not try to console me.  And it was so powerful.  Now as I am faced with my own grief and those around me, I constantly strive to be in that space of allowing.  It seems so simple, yet it is so difficult at times.

Yellars

[caption id="attachment_3488" align="alignleft" width="300" caption="Discussing yellars with Uncle Patrick."][/caption]

A couple of years back, Ellie's favorite colors were yellow and orange.  When we would go for walks, we would look for yellars (yellow cars).  At first, I thought the game wouldn't be very exciting because I had not, up to this point, noticed many yellars around.  The strange thing was that the more we looked for yellars, the more we saw them.  One day we took a walk to our local library, a walk that was over 2 and half miles round trip.  We spotted 20 yellars on that trip.  I was amazed.  It reminded me how powerful seeking something is.  Ellie taught me so well that day that whatever you look for, you get more of. 

Now that I have shared the magic of the number 13, and how it seems related to Ellie, stories of the number have come back to me.  My fabulous brother, Kip, came to visit last Friday.  He sat in seat 13F on the airplane, right next to an empty 13E (e for ellie of course).  Then when he went to pick up his rental car, guess which slot it was parked in?  You betcha.  13!  He called his dad and step-mom to discuss.  They went to a favorite restaurant they had taken us to when we visited Kansas City with Ellie several years back.  When Roger received the bill, he exclaimed,  "You are NOT going to believe this".  The total for the check was $13.13. 

I guess it just reminds me right now that I can either look for the absence of Ellie--how I cannot physically see her or touch her or smell her or hear her.  Which of course fills me with longing and sorrow.  Belive me, I have gone down this road over the last week and a half, and I am quite certain I will find myself on that trail again.  Or I can look for the presence of Ellie in all those wacky 13s or all the wonderful cards and e-mails reminding me of her wonder and splendor.  I suppose for me, right now, it is a powerful reminder that even amidst this sometimes tremendous weight of grief, I can still choose what I focus on.

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.

Too Late

Maybe you read the title of this blog and thought, oh boy, here comes another emotional one.  Get out those tissues.  AGAIN.  Maybe you contemplated all the things that are too late to do now that Ellie has passed.  Too late to send a package.  Too late to hug her.  Too late to ask her a question or hear a new word.  Ugh. 

On Thursday, January 13, as we walked Ben home from the bus stop, he talked about how he had made a special mobile for Ellie but he had forgotten it at school.  Now it was too late to give it to her.  I suggested that we could still hang it in Ellie's room, but alas that was not at all satisfying.  As hard as it was as his mother, I had to let him have that disappointment and grief.  This too was part of the process.

Over the last week there have been times that I've thought about things that we didn't do.  We didn't get all the photos I wanted hung on the Wall of Love.  We didn't get a bigger bookshelf in Ellie's room as we had discussed.  I mean I am sure if I went down this road I could think of plenty of things that we didn't do.  Then I realize that a lot of these undone things were more important to methan they were to Ellie.  Maybe just maybe the point of the conversation was the fun of planning these things more than the actual accomplishment of them.  Because if anything, Ellie was all about the joy of the journey, not about waiting for something to happen to get happy.  (Reminds me of her silly saying, "happy is happying.")

Oftentimes, when Ellie was in the hospital, someone would say, "Have fun"  or "Have a good day" or something along those lines.  Ellie would reply, "It's too late."  Then she would pause.  I would squirm as the discomfort in the room mounted.  Sometimes the person would look back in alarm, wondering why it was too late.  Ellie would inform the person that she was alreadyhaving a good day or having fun.  What a lesson. She wasn't going to wait until she was out of the hospital, or even able to get up out of bed to have not just a good day, good was never good enough for our Ellie, but to have a grabulous (great + fabulous) or fantasterrific (fantastic + terrific) day.  Her joy was not dependent on where she was or even what was happening inside her body.  She did not have to make a plan to do something to have fun, she already was having fun.  Now when someone suggests I have fun or have a good day, I immediately think, it's too late.

Bounce Back Ben

Thursday and Friday nights last week, we had a slumber party in Ellie's room.  Ben decided to sleep in Ellie's bed.  We have been amazed at Ben's resiliency.  He told his class on Thursday what had happened to Ellie.  The class decided to make cards to help him feel better.  His biggest concern at the end of the discussion was how his classmates could contact him to set up playdates (he is all about the playdates right now!)  He will occasionally mention something on his mind, for example when he told me he had a hard time believing Ellie is really dead.  For the most part, he is Ben, being 5, looking for gifts, hoping for more toys, making up jokes about his bum, eating all the time, and trying to cheer us up if we seem a bit too somber.  He has always had such strength and resiliency, I don't know why I would've expected anything less.   He too is a superhero in his own special BEN way.

 

Seeing the Magic

This blog is like a life boat, at times saving me from drowning in a sea of emotions.  Everything seems so wange (weird strange) right now.  I am reading a Jennifer Weiner book.  The main character discovers her husband is cheating on her.  As her world falls apart, everything seems surreal.  Even words, like yoga, sound absurd to her.  That's how I feel right now.  We went to the movies--all 4 of us--something we had never done before (I mean Lotta's only 5 months so it's not that unusual).  As I was leaving I had that sensation of no one there knowing that my daughter died the day before yesterday. 

There was a morning this week as Ellie lay in bed, struggling to breath, when I heard the trash truck.  I had a moment of incredulity.  How could something as normal as trash collection be happening while my daughter lay there hanging on to the very last threads of her life?  It seemed absurd. 

Ben was talking about time travel this morning and I immediately thought I would go back in time to when Ellie felt GOOD and spend some time with her.  Even if it was for a moment, I could absorb her smell, her smile, her beautiful brown eyes that seemed so wise.  Ask her all the questions I have now that I can longer ask.  It all seems so fleeting.  My arms feel so empty now.  I suppose it wouldn't matter because you can't really truly capture it, it's like trying to hold onto air or water or even love.  It is constantly escaping no matter how hard you try to hold onto it. 

And yet, I find evidence of Ellie everyone.  I mean beyond all the photos I have displayed.  This morning Ben wanted to have art time.  As we were getting out more and more art supplies, being messy is of course an essential part of art time, I opened our box of Cray-Pas.  All of the Cray-Pas were peeled and broken.  From a hospital stay when Ellie just could not help but break and peel them "for" me. 

On Thursday, Ben went on a playdate.  Brittany, Betsy and I sat watching 3:oo programing (my all time favorite time for daytime television) and the time when Ben is typically watching PBS Kids immediately after school.  We kept switching between 3 shows--Ellen, Nate Burchus, and Steven & Chris.  At one point, we switched to Steven & Chris, where John Edwards, the medium (not the politician) was a guest.  He was answering questions from the audience.  He said, I am getting a name--with the letter "L" in it, a vowel starting.  Hmm that's interesting, we thought.  No one in the audience really responded.  Then he said, "I'm getting brain cancer".  The woman he was talking to said there was cancer but nothing with the brain.  Then he said, "I'm getting the number 13."  We were all flabbergasted.  I mean it didn't make any logical sense.  Brittany told me that she felt like Ellie was just bigger than time--superceding when the show was filmed.  Beyond time.  Beyond space. 

Speaking of Brittany, her co-worker noticed that Ellie's time of death, 6:34 also adds up to 13. 

Yesterday I was listening to Pandora and a song I'd either never noticed or never heard came on.  It was performed by Faith Hill called There You'll Be.  It felt like it was straight from Ellie, just as after my friend Lubi passed, I heard the song We'll Be Together performed by Janet Jackson and had no doubt that it was a message from beyond. 

Finally, a Monkey Bar Gym friend, Debra, e-mailed me this.  "The circle of life is crazy.  The day Danica was born, a good family friend died.  Today, at 4:55am my good friend and cousin gave birth to a little girl....named Ellie."  

Call me crazy (I am quite certain I've been called worse), but even through the fog of my grief, I see signs of Ellie magic all around me.  Yet this morning, I would still trade it all for time travel.

Funderful

On Tuesday, one of our favorite PICU nurses stopped by to visit Ellie.  Now we have had a LOT of spectacular nurses in the Children's Hospital.  I mean STELLAR.  But Katie is at the top of our list of the BEST of the BEST because not only is she just super at what she does, but she also has such a loving, kind way about her.  I never felt uncomfortable leaving Ellie in her care, because I absolutely knew that Katie would take the utmost care with my daughter.  Katie is such an awesome mix of being able to be in the room, talking and really connecting with where you are AND being able to be a silent figure, sneaking in performing her job and leaving.  I will miss seeing her.  It's ironic, because Thom said he always raced to get his showering accomplished in the morning so as not to burden Katie.  And now we discover that was her favorite part of the day.  Even more ironic is that Katie had no idea that I was collecting Ellie lessons on my blog, just felt inspired to write it and bring it.  Thom was able to share it with Ellie. 

Dear Ellie--I sit here thinking long and hard about what I want to say today.  I feel that my words can never be as brilliant as yours are.

I want you to know a couple of the lessons you have taught me and how my life has been changed by those lessons.

First of all, you taught me that I need to work on my memory.  My favorite favorite favorite part of my day was our mornings together.  Dad would go shower and get ready for the day and I got to spend my morning chit chatting with you.  Every morning I came in to do your cares, we would review the new words you were sharing with me.. and the next time I came into your room, I would forget them already!  And you, in your glorious purity would simply say, "That's OK, maybe you should write them down."  That always made me smile.  I want you to know I tried very hard to remember those words, but all I kept thinking was how I hoped to get through your cares without making you feel anxious, sad, or scared. 

I also wanted to let you know that I think of you and will always think of you when I hear "Ellie words."  The other night I was watching TV and I heard the word "funderful" (fun and wonderful).  That word so far is my favorite because it reminds me of just how funderful you are.  Even when you are very sick in the hospital, you still had the spirit to make those around you smile and laugh (fun). When leaving your room there were times when I thought to myself, amazing.  Truly amazing the spirit of that little girl and the light she spreads around her (wonderful). 

The last thing you and your family taught me was what unconditional love truly looks like.  I am not very good with words (as you know) so I like to use quotes and this one says exactly what I want to say to you. 
"What then is the ultimate object of this pursuit, the goal that transcends all others, that surpasses health, wealth, and power?  I believe it to be the consistent practice of the law of unconditional loving.  Medicine tells us that health is the greatest goal.  But health is not the greatest thing in life.  Greatness exists in places where health is absent."  Greg Anderson

I want you to know that you are loved unconditionally.  You are so lucky to have the parents you have chosen.  Not only have you been a teacher to me, but your family has been as well.  I now have a better idea of the meanings of dedication, love, and resilience. 

So, thank you.  Thank you for allowing me to be in and a part of your very precious life.  It has been a true honor and a blessing.

Ode to Joy

[caption id="attachment_3414" align="alignright" width="300" caption="Thom, Ellie, Debi, Zach, Sara, Dan."][/caption]

My stupendous sister-in-law, Sara, sent this on Wednesday.  It is so beautiful and perfect I had to share it. 



 I took a long walk today.  Really needed to.  Yesterday I let myself stay in a yucky, very sad about Ellie slump.  Woke up knowing today had to be different.  So I walked one of my favorite parts of the city for hours.  The wind was bitterly cold, but for the most part I didn’t notice.  I kept thinking about Joy.  How amazing it is that a ten year old managed to insert that old fashioned notion of Joy (in a much-improved version: JILLED) back into the vocabulary of so many people she met – and even more that she hasn’t.  Joy is something beyond happiness – it seems to be “happiness despite ...”, deeper and more spiritual than happiness, which is so tied to circumstances.
Ellie DOES joy better than anyone I know.  She’s just not a tied-to-circumstances kind of gal.  
When Mia was struggling with seizures, I experienced the same thing you are talking about  - that intuitive mother KNOWING or FEELING what your child is enduring.  With Mia, it was an overwhelming sense of fear.  Which totally sucks.  I love that you are communing with Ellie despite today’s outward circumstances – I especially love that you are not sensing fear (and not surprised, either – fear and joy don’t mix).
The joy Ellie lives is not something you can manufacture in yourself.  It is part of that most sacred trust – the soul, the life of the Spirit, the breath of God that lives in our hearts during our journey on this earth.  Ellie, more than most of us, gives that Spirit a lot of breathing room.  She isn’t lost in distractions of mind and heart, she doesn’t crowd her soul with anger and bitterness.  
Elisabeth – Betsi – Zeba – Ellie – we love you so much!  Sleep well tonight, our Joy.
Sara

A Couple of Things You Can Do

When we told Ben about Ellie dying, one of his first questions was "Will there be a stone?"  This was a bit awkward as we are not burying her in a cemetery and not having a traditional funeral.  While in the hospital, I just could not envision a funeral where everyone would wear BLACK--Ellie's least favorite color and sitting quietly.  Ellie would never have attended such an event (she would not have been able to NOT talk) and so it did not seem a fitting way to honor her.  We have had an autopsy performed on her body so that the hospital can learn as much about her as possible.  After the report is written, there will be a conferance at the hospital to discuss and learn.  We felt it was a fitting tribute to Ellie since she has spent her life teaching in so many ways for that to continue even after she is no longer in her physical body. 

At Ellie's hospital, American Family Children's Hospital, they currently have a fundraising campaign.  You can donate money and buy a fish that will have Ellie's name on it displayed on the surgical floor.  We thought if any of you were interested in sending flowers, this would be a better way to continue to spread Ellie's joy.  We also thought it would be fitting since she spent so much time at the hospital and so many people love her there.  If you are inspired to participate in this, please send your check made out to American Family Children's Hospital to us (e-mail me at debibetsi@yahoo.com for where to send it) and we will collect them and present them to the hospital.  The hospital will then send you a reciept for tax purposes.  This will give not only us a place to go and remember Ellie, but all of the wonderful professionals who worked with her.  To find out more about the fundraiser go to http://www.uwhealth.org/childrens-hospital-donations/go-fish-for-american-family-childrens-hospital/27323. 

Also, we were averaging about 40-50 hits a day on my blog at the beginning of this month.  Then it went up to 90.  Then it climbed to 800 on Tuesday, when my cousin, Lecia mentioned me in her blog (www.leciawphinney.com).  Yesterday I had 1,000 hits.  My sister would like to have 6,000 hits on my site and when she said that I thought, "Now THAT would really be spreading the Ellie joy!"  So feel free to pass on my blog info to anyone you feel so inspired to inform.

Thinkin Showtunes

[caption id="attachment_3403" align="alignright" width="450" caption="Ellie with our neighbor, baby Max."][/caption]

The thing that struck me the most about yesterday was how people who came would arrive crying and leave laughing.  What a fantastic testament to Ellie's life. 

Here is a gorgeous e-mail I received from Audra a friend of my brother, Kip.  One of the many things I love about this e-mail is how she was thinking of show tunes because I think everyone breaking into song and dance is such an excellent idea. 

I have been so touched by your family's life and times through Kip that I wanted to reach out to you.

Trying to find the right words, my confused head immediately drifts toward show tunes (of all things)  and one of my favorite lines in any song:  "Measure your life in love."  Something Ellie had in abundance - love.   It is easy to measure by time because we know how long a day is, and we know how long a year is, but love enriches the soul and nourishes the heart in a million tender ways that time has no way to express.  And Ellie must have felt that every day from all who loved her.

There is a wonderful book by Wallace Stegner (one of my favorites) called "All The Little Live Things" that has one of the best beginnings and endings of any novel.  I have always been struck by the narrator and the message of the story.  The main character is upset by the untimely death of a cherished one, and torn up by the fairness of things, and how come, and why, and all the natural questions that come up.  And he wonders what's the point of all the feelings and emotions and difficulties that have unraveled.  And he realizes the only alternative, the only way to save him from his current pain, would have been to not have her in his life and miss out on all the beautiful wondrous things she did every single day, all the incredible things she shared, all the beauty she found in the world. 

His resolution is simple:  "I will be richer all my life for this sorrow."

It's one of the only things I have read that has made much sense to me in times like these.  To understand we have to have feelings in order to have the capacity for love.  Ellie was a remarkable child.  Thank you for sharing her life (and love) with us.

I hope each day brings you richness.

Audra

Quiet

[caption id="attachment_3391" align="alignright" width="300" caption="Ellie on her first birthday, eating her first cake. You will be surprised to know that it was a sugar free apple, not chocolate."][/caption]

The day I have been dreading has come to pass.  Ellie went to play with her angel friends early this morning at 6:34.  I am so fortunate to have been surrounded by people I love all morning.  Last night was one of the hardest of my life.  At around 1 am, Ellie's breathing became even more difficult, it sounded as if she were drowning.  Strangely, I did not feel as if she needed me by her side right then, it felt instead as if most of her were already gone.  It was as if her body had been fighting so long and so hard to live that it reflexively kept going even after she'd left.  I kept having the wondering, "Could I BE in this moment?"  That THIS too was part of what Ellie came to do.  Because every ounce of me wanted to be anywhere else besides hearing her struggle to breathe like that.  I looked outside her bedroom window at the total stillness.  So strange that the day she was born was a huge blizzard in Chicago.  I tried to meditate (which I am highly highly unskilled at as my mind is typically way way too busy) I tried to think of things I appreciated.  It was excruciating to hear.  Finally after about 2 hours, I threw a pillow at Thom (who was sleeping on a mattress beside her bed) and asked if he was really truly able to sleep through all of that noise.  Apparently he could, but a pillow at the head was the key to his wakefulness.  He readjusted her in bed and we gave her more morphine, just in case.  And probably mostly to make ME feel more comfortable.  When Thom woke up at 6, he went and took a shower, I stayed in bed nursing Lotta.  All of a sudden, it was quiet.  I waited because she had been skipping breaths all night long.  I went over to Ellie's body and looked.  She was no longer breathing.  Ben ran into the room with all of his Ben energy asking if I could come downstairs with him.  When he went to get Thom, he told Betsy that Ellie was not breathing and that meant she had died. 

[caption id="attachment_3393" align="alignright" width="300" caption="Ellie around birthday number 2."][/caption]

All this dying process has been just like Ellie's life so much MORE than I ever expected.  More laughter, more pain, more frustration, more love, more peace, more discomfort.  As we stood downstairs this morning, Betsy commented how what surprised her was how suddenly quiet it is today.  Maybe quiet both from Ellie being physically gone and quiet from Ellie being still with us, in a larger way.  That still small comforting quiet, rather than the big void kind of quiet. 

Yesterday Betsy and I were discussing how the number 13 is such a spiritual number.  As you may or may not know, today is January 13th--13 days until Ellie's birthday on January 26th (which Betsy pointed out is 13 twice).    We just thought that was kinda fun to recognize all the 13s it seems Ellie has chosen. 

I am sure I will have more to write later.  Everything seems so surreal right now as I glide through this first day without Ellie here in her physical form.  As her body lay in her bed before she was taken away, I suddenly had the thought that now, finally, Ellie is at peace and feeling good.  She would be wondering why all of us are making such a fuss when she is feeling so blissed out. 

[caption id="attachment_3395" align="alignright" width="300" caption="Ellie around her 3rd Birthday."][/caption]

Ellie's 4th grade special education teacher, Molly Pettit sent this beautiful e-mail to me this morning and I had to share it with you all. 

Debi and Thom-

I am not Ellie’s parent and can’t even imagine what your family is going through right now, but as a mother, I have tried to bring myself solace with these thoughts and thought I’d share them with you.  

 Obviously, I have no idea what Heaven is like, but believe that there is a place where your soul goes when you die.  I am not sure I believe it’s the place pictured in movies and storybooks with clouds, harps and angels, but think it instead might be a place of your own making.  Your very own Utopia.  

Recently, I have imagined Ellie’s Heaven.  I think her Heaven is a place where a little girl can be be healthy and free.  Free of all that ails her.  A place where she can run without having to worry about tripping and/or falling, a place where peeling crayons isn’t her biggest obsession because she’s able to do so much more, a place where she enjoys eating chocolate chip cookies (who wouldn’t) but much to her mother’s delight likes veggies too!  A place where the possibilities are endless because she’s no longer limited in any way.

I picture her surrounded by all her books.  She’s busily reciting the pages she knows by heart, reading the words or just counting the pages.  She’s wearing yellow, orange and pink.  (Looking very fancy of course!)   Without pause, she’s creating new words to share with those around her.  

Thank you so much for sharing Ellie with us.  Not just at Marquette, but allowing us at the hospital and opening your home to us so we could be a part of her life in the end.  It was a pleasure being her teacher last year.  I will forever remember her warm smile, resilience and her care and thought she displayed for those around her.  I have a feeling that right now she’s saying “Durry (don’t + worry) everyone, I’m doing just fine!”

Thinking of you all!  Love, Molly Pettit

The Process

Ellie continues to struggle more with her breathing.  It is becoming increasingly difficult to witness.  Reminds me of the struggle of giving birth.   The process. 

A couple more thoughts from Ellie's Grandmama:

The privilege has been given to all in the family in addition to all the people Ellie touched with her sweet smile and disposition.  I have felt that I grew by knowing her.  My life is so much richer to have  a granddaughter named Elisabeth Rose Kennedy.

 

The phone just rang and I was able to share with Sandy again how much this special little person will be missed.  The best thing for me was her unique ability to build words.  That one trait just caused me to shake my head in wonder.  How can she do that with such ease?

 

I have prayed that she see angels so many times and I trust that is happening.

 

Give her a kiss and a hug from her Grandmama

 

I am so glad that Barbara acknowledged that everyone goes through the mourning process differently.  And there is no time frame.  Some of us will never completely finish our own grieving process.  Ellie has been on my mind pretty much allllll the time since Thom called me from the hospital when she was 20 months old.  Ever since that time, I have thought of her often during the day and praying for her; encouraging my friends to do the same; sharing her incredible language with whom ever would listen to me.....again.  When Ellie finally passes I will still be remembering her special brand of sunshine and missing her terribly.  She is a part of all of us and I like that.

 

Debi, do you remember when we were all in Richmond?  You, Thom and Ellie had just returned from New York and her Make a Wish experience.  We were at the farm.  Ellie had a bad cold and felt crummy and did not join us.  You stood out in the field and felt so bad that Ellie could not enjoy what you had just experienced.  I said to you that she has missed nothing because no one could give her what you and Thom could.  You gave her total love in a way that no one else in the family could.  You "got" her early on.  And you gave her everything she needed.  I am so proud of you and Thom and your role as parents.

Tidal Wave

According to one of the pieces of literature floating around here, grieving is exhausting.  So I must be doing it right. 

Last night we had a sort of impromptu slumber party in Ellie's room.  All throughout the night, I would hear Ellie stirring and wake up to check on her.  Then I wouldn't hear her stirring and I would wake up to check on her.  Not an entirely restful experience I must say. 

Ellie continues to hold on, mostly resting and having some difficulty breathing, occassinally skipping a breath. 

Here is a gorgeous letter written by Ellie's bus attendant, Barb.  I thought that with so many of us grieving Ellie together, you might appreciate this one as I did. 

Debi:  I was filled with so many profound feelings after reading your blog where you really just expressed your feelings.  Bravo to you for your courage!  And I believe you are so right in talking to Ben about the situation.  When my middle son died, my oldest was about 4 years old.  He had so many questions!  One I poignantly remember is when he crawled in my lap and asked me who was going to rock Shane when he cried and who would love him.  I explained that the angels were rocking him as we spoke and that he was loved not only by us, but by God and all his legion of angels.  I also felt it was healthy for him to express these feelings.  He is now 28 years old and has sad but satisfying memories of the short time that Shane was physically with us.

Grief is a strange animal I have found.  It can sweep over you like a tidal wave.  Sometimes it feels like something is hovering just around the corner.  For myself I found that if I just let myself go when the tidal waves hit, I learned that they would subside.  I learned that people experience grief very differently.  Some don't want to talk about it or admit the monster that is standing in the room is really there.  Me, I found, trying to ignore it took way more energy than facing it squarely.  I will admit it almost knocked me to my knees on more than one occasion.  I also believe it has helped shape me into the person I am.

I don't believe the people we love and lose ever leave us except in the physical form.  I see and feel Shane at unexpected moments and am so grateful for those times.  Ultimately I have been able to realize he is with me always, just as Ellie will be you always, just not physically. 

I believe a bond is forged between mother and child almost from the moment of conception.  When I first met Ellie, I believed that she is an earth-bound angel sent to bring joy and expand the world of everyone who loves her that will allow that to happen.  I believe Ellie would want you to remember that as part of her legacy.  I believe if she could, she would look at you with those big brown eyes and say "durry" (don't worry) mommy.  This part of the "cycle of life" is so Hard!

Maybe I am speaking out of turn, and if this hurts you in any way, please just disregard it.  I am sending it in an attempt to commiserate and console.

I am sending warm regards and emotional support to you all.

Barbara

Her Special Brand of Sunshine

[caption id="attachment_3362" align="alignright" width="300" caption="Ellie finds her fingers."][/caption]

Throughout this morning, Ellie has had some restless moments, a little bit more difficulty breathing.  Our ultimate goal is to keep her as comfortable as possible.  She closes her eyes for awhile then they pop back open.  Earlier, my mouth suddenly tasted like salt and, again, I wondered if that was me or if it was what Ellie was experiencing.  I mean it is possible that my mom or Betsy put salt in my tea as a joke, but I seriously doubt it.  Then Thom said he had had some moments of extreme head pain, which never happens to him.  I had to wonder if he was picking up some of Ellie's sensations.  I know it sounds wacky.  But still.  Betsy shared that the day Ellie was diagnosed, she had an extreme headache which was strange because she also never gets headaches.  When I shared some of the wange (weird and strange) sensations I was having yesterday, my grabulous friend, Amy texted to say how she was so glad how connected we are feeling with Ellie right now.  I thought that summed it up perfectly.

A beautiful card was on our front porch this morning.  It was delivered by one of Ellie's teacher's aids from this year.  What I liked most about him was how gentle and kind he was.  From this space, he was able to get Ellie to do things that I am not sure anyone else could have.  For example, the day I came to volunteer for the Marquette Mile, he told me that Ellie wanted to continue writing (something she'd always hated doing) rather than walk.  Whatever he is getting paid, it is not enough.

This card reminded me of Ellie's oh so very colorful hats.

This card reminded of Ellie's oh so very colorful use of the English language.

This card reminded me of the sunshine that always shown through for Ellie.   The sunshine that would always come to a halt as soon as I suggested we do some schoolwork:

Walking 500 steps in a day.

Learning to write numbers.

Remembering what day, date, year, and month it was.

Pretty soon though the sunshine would return, never having disappeared altogether.  "Oh Oooooooooooooaaaaaaaaaakkkyyy.  Let's just do this thing", Ellie would say.  We would push and pull until the assignment was over.  "Now can we count dots"?  Which is all Ellie wanted to do in the first place.  She was comfortable in the world of dots.  And she could count forever.  If it were possible to get to a bazillion, she would have gone there.

I think about Ellie often.  She made me laugh.  She showed me how to live life fully, even through adversity.  Although if there was adversity in Ellie's life she never let on.  She was an inspiration.  These are not just idle words.  She truly was.  Her special brand of sunshine still shines through.  I miss her.

Wisdom

 Ellie finally finally settled down at about 3am last night.  She is resting now.  Yesterday morning I was feeling such appreciation for all the wonderful time we've had together.  This morning I feel panicked, "Oh NO!!  I've changed my mind please don't go!!!!"  Yesterday it felt as if Ellie were trapped in a spider web and today it feels as if she is holding on by one string. 

[caption id="attachment_3352" align="alignleft" width="300" caption="Appreciation to Betsy C for dropping everything, once again, to come be with us. Here is Betsy with a newborn Ellie."][/caption]

 

I will continue to share some of the awe-inspiring messages you all have been sending to me via e-mail.  If you are not wanting something shared with the larger blog community please let me know.  Otherwise, I'll consider anything bloggable.  Below is a poem written by one of Ellie's favorite people, Cynthia. 

For Debi & Thom, with Admiration and Love

I have always thought
your daughter
Elisabeth Rose Kennedy
to be one of the wisest beings
I've ever met.

When she was a star in the sky
she chose you
as her parents.
I doubt it gets any wiser than that.

Way to go, Ellie!

Debi & Thom
Mom and Dad
I choose you.
I want to be your daughter,
forever.

She lit a spark
in her dad's eye.
Gotcha!
Right where I want you.

She became life
in her mom's womb.
Safe and warm.
Just where I need to be.

[caption id="attachment_3353" align="alignright" width="300" caption="Ellie on her first Valentine's Day."][/caption]

Together,
you traveled around
the circle of life.

Along the way
you gathered family
and attracted friends,
inviting us to experience
the complete and utter
Awesomeness
that is The Kennedy Family

Thank you for your lessons
in compassion
levity
grace
courage
and love.
Sweet sweet love.

Always, Cynthia

Registration

Just to let you all know, if you register, an e-mail willbe sent to alert you when I have posted a blog.  It wasn't working but my tech support (aka Thom) fixed it today.  and don't worry about me selling any of your info.  That would take a lot more brain power and energy than I currently possess!!

Also if you want to leave a comment, you must be registered to do so.  Some of the e-mails I have been receiving are so incredibly beautiful, it seems wonderful to share them with the community as a comment, if you feel so inspired.

You Can Do It

[caption id="attachment_3337" align="alignleft" width="300" caption="Two-year-old Ellie and her Agogo."][/caption]

Ellie has been awake the entire day, which hasn't happened since I cannot recall when.  Although she could not talk intelligibly, she made moises (mouth noises) and played finger games (we always thought finger games were the best because you always have them with you).  It has been an exhausting day of trying to memorize every single inch of her.  Every time I think she is going to fall asleep, her eyes pop back open.  I feel so wange (weird strange) right now and I wonder how Ellie is feeling at this point.  It seems similar to that point in birth when you just feel that there is no way you can possibly go on.   It also seems as if she is hovering above us, only half here.      

 

Here is an Ellie lesson from my mom, Rosemary, who lives in Malawi. 

MY LESSON FROM ELLIE - YOU CAN DO IT

Even though I was the one who suggested that we ask people for "Lessons from Ellie", it has taken me a long time to be able to sit down and write what I have learned.  Part of the reason for the delay is that there are so many, it is difficult to pin point one.  The other part is that the responses have been so beautifully written, that I've wondered if my words could even compare with what others have already said.

 

One day, I was trying to open something and felt like it was too difficult for me and so wanted to give up. Suddenly Ellie said very convincingly to me, "You can do it".  Those words spoken by her in such a courageous voice, gave me the power to try again and sure enough "I could do it"!  Many times since then when I felt like giving up or circumstances, especially in Africa when the needs are so great and I feel overwhelmed, I can hear HER saying "You can do it".  I suddenly feel the courage to go on and to not give up and try again to do whatever it is I must do. 

I feel so blessed to be a part of her life and for having learned ALL the lessons that she has taught me and so many others.  She has truly been one of my greatest teachers and I'm thankful that her words of encouragement will always be a part of my life.

Love and huggle-snuggles from Agogo (the word for grandma in Malawi)

[caption id="attachment_3338" align="alignleft" width="300" caption="Agogo and an even younger Ellie."][/caption]

As her grandmother who also has Rose in her name (Ellie is Elisabeth Rose), we have felt a kindred spirit and on each visit would compare all the things that we have in common - favorite colors, not liking loud noises, making up new words, reading books and chit-chatting among the many we would discover. 

The Privilege

How many mothers have the privilege to be a participant in their child entering and leaving this physical realm?  I feel wangely (weird strangely) peaceful as I sit here on possibly Ellie's  last day.  I would rather have had almost 11 years of Ellie than 100 years of anyone else.  My life is so much the better because of her.  Any pain is well worth the price for the utter joy she has brought.

This morning Ellie has had her eyes open.  She has been looking around a lot, muttering.  As I said before, I like to think she's talking with her angelic friends.  At one point, I told Ellie that she had really accomplished what she came her to do.  She had spent almost 11 years jedding (joy spreading).  All of the sudden she said very clearly, "yeah". 

At another point, as I was lying beside Ellie I suddenly had an urge to sit up.  I thought how strange that was. Because all morning I'd made a conscious choice to be by her side particularly while she was awake.  Then Ellie started trying to sit up.  I wondered whose thought that had acutally been.  All of Ellie's life she has had the uncanny ability to read my thoughts.  But this time I could not tell whose thought it was. 

Ellie continues to be awake and looking around, muttering at times.  She seems, for the most part, comfortable and peaceful.

Crazy Seeping Out

Ok so perhaps the last blog was a bit dramatic.  And that was where I was at and I thought if I could put words to someone else's grief as well as my own, then it would be worth a somewhat revealing possibly later embarrassing blog.  So I went for it.  Thanks for all your comfort in the form of e-mails!  I must say it is harder and harder these days to keep all my crazy stuff from seeping out of this package I'm in. 

We told Ben on Saturday that Ellie is not going to get better.  That she is in fact going to die.  He seemed shocked.  And throughout the weekend he continued to have relevant, smart questions about the situation.  First he thought about how we could now go on vacation.  Then he was sad.  He shared last night (don't tell) that sometimes he likes Ellie and sometimes he doesn't.  I was so appreciative that he was able to verbalize that, because a thought like that could really cause a lot of guilt in a situation like this if it was allowed to fester.  He also shared how talking about death makes his heart and his tummy feel funny.  I agreed that indeed it does.  He shared that sometimes he cannot believe that Ellie is actually dying.  I agreed that I too wonder about that and then I remember that she really is.  This morning when I was particularly weepy, I told him that I was feeling sad right now, just as he sometimes feels sad, and I knew that I would also feel better soon, just as he does.  I was  having one of those moments where I felt as if I would not be able to stop crying EVER.  But I did just like I told Ben.   

Tonight two of our magnificent doctors, Dr. Iskandar and Dr. Puccetti came by to visit.  Dr. Iskandar confirmed that Ellie has not gotten better and it does seem that the end is drawing near for her.  He apologized.  I reiterated that I did not in any way feel that there has been a failure here.  We have had almost 11 fantastic years with Ellie.  Her body is giving out on her, it is time to release her and allow her to go play with her angel friends.  I shared with them how when Ellie was 4, she saw angels before her shunt placement but not afterwards.  Now when she is talking and reaching out unaware of the human visitors in her room, I imagine she is conversing with her unseen friends.  It makes me feel better. 

Great big shout out to Cynthia for not only visiting but bringing bagels AND taking Ben so he could go have fun with Caitlyn.  Also gratitude  to Esther for hanging with Ellie AND bringing us lunch (yes we have been well fed!)   Thank you to Ms. Zwart for once again spending time  with Ellie this afternoon.  She has the highly challenging job of telling some of the students at Marquette tomorrow about Ellie. I hope that some of Ellie's angelic friends come to help her out.  Big shout out to Dr. Jen for visiting and bringing gifts and discussing doctor stuff even though she was here as a friend.  Gracias to our neighbor, Chris for reading to Ellie and playing with Ben yesterday afternoon.  Merci beacoup to Lainie and Argyle fand Gavin and Aubrey for the super fun playdate Ben had on Sunday plus transport to and from said playdate.  And finally (I think) a big shout out to Kathy for bringing us dinner yesterday (yummilicious!!)

The Emptiness

Another seizure yesterday afternoon.  More sleeping.  No talking.

Out on the raw and ragged edge of nothingness.  Fighting a battle I won't win.  A battle against time.  A battle against an unseen enemy.  A battle that comes for us all too soon in every single case.  That is where I stand.  Or maybe standing takes too much energy.  So maybe I could lie down instead.  This little person who has been with me for 10 years, close to 11.  Sending her alone into the unknown.  Oh how I wish I could protect her, hold her hand, hold her, talk to her let her know that I will always be with her no matter what form she is in.  She is a part of me, I am a part of her.  Will it ever feel right?  Can I squeeze appreciation out of every single second that she has left with me in this physical form?  Can I give her permission to go?  Will she stay if I ask nicely?  Will she go if I release her from the contract from this body that is letting her down?  How will I possibly come into this room again when her body is no longer here?  How can I possibly ask her to stay when she can no longer do the things she loves?  Is this really happening?  It all seems so surreal.  As I stare into the abyss, so many more questions flow than answers.     This beautiful flower whose bloom is wilting.  Those big brown eyes, so filled with love and curiosity and wonder.  How will I endure a day without seeing them?   Will I be able to endure the emptiness that she will leave behind?

Playing Limbo

Right now it feels as if we are playing 'limbo'.  It feels as if the bar is getting lower and lower of what Ellie can and cannot do.  Even earlier this week when Ellie was doing "better", the better meant being able to talk and sit on the floor.  Not being able to actually do burke (book work).  Ellie had a seizure last night and then another one this afternoon. 

 

Thanks to all who have participated in the parade of love this weekend.  Thanks to Zumba Jen for her lovely visit and delumptious soup.  Thanks to my in-laws for driving all the way from St. Louis.  Thanks to Cynthia for her visit and errand running.  Thanks to Sue for more yummilicious cookies and reading and talking time. 

I would be negligent, if I did not mention all of the wonderful behind the scenes work my mom has been performing.  Her continued efforts at taming our laundry monster pile, sweeping the floors, emptying the garbage, cleaning the kitchen, rocking the baby to sleep, sitting with Ellie--that doesn't even cover all the emotional support--have made my life so much easier.  With her here, I have been able to focus on the people in my life.  Thank you does not even begin to express my appreciation.

Here is another lesson from our frabjous neighbor, Chris.

One thing that I'd like to share that Ellie has taught me is how true the statement is that "life is not the sum of what happens to you." Ellie truly experiences each moment that she has, enjoying whatever is there for her, whether it is colorful crayons or a chocolate chip cookie or a person that she loves. I believe her ability to do this is at least partly because she also experiences pain or frustration or whatever else may come up in the moment, rather than repressing those feelings. But I also believe it is because she is open to joy and beauty and love and focuses on that rather than on what is unsatisfactory. Ultimately, the fact that she is so often "jilled" or "frabulous" in conditions under which I would be very tempted to be full of self pity, is an incredible life lesson. She doesn't let a story about "what should be" get in the way of experiencing the beauty and wonder of being alive and surrounded by people who love her. She is a great spiritual teacher as well as a little girl who is very loved.

 

Love to you all,

Chris

The Hat Collector

[caption id="attachment_3293" align="alignleft" width="300" caption="Before hats,there were fancy hair bows."][/caption]

Ellie continues to be for the most part nonverbal and sleepy.  We discovered yesterday that her sodium is low which puts her at an increased risk for seizures.  The great thing is there are measures we can take to help her body increase its sodium (decrease the water we give her). 

A big shout out to all of you who have participated in the Parade of Love this week--Brittany (twice and with a Pooh Bear to boot!),  Molly Pettit, Kendra Latko, Kristin, Peter (with his full body, contagious laugh), Dr. Puccetti, Cynthia (also twice!) and a lots of girltalk visit with Esther yesterday.  (e-mail me if you would like to participate in the parade of love at debibetsi@yahoo.com) We have felt the love around here! 

Here is a beautiful Ellie lesson written by Ellie's cross categorical (special ed) teacher this year.  I regret that we have not had the pleasure of getting to know Ms. Corsi better as Ellie has not been in school that often this school year.

When I think of Ellie, are her hats and favorite colors. Before she greets you with her pleasant personality and creative words, Ellie greets you with her style.  I love those big pink furry ones the best.  They look a little bit fancy and comfy at the same time.  And you can't help but smile when you see Ellie approaching.  Ellie's hard work during this school year reminded me that we all have potential to try new things and grow--no matter what the struggle.  Ellie was making progress in her reading and math skills.  She is a trooper and amazingly talented at letting you know what she wanted.  She also brings out the best in her classmates, who were always willing to give her a hand.  I am so lucky to have Ellie as a student this year. I miss her hats and her casual approval when I used one of her words.  Here's to feeling jilled today!   Love you little one, Ms.

Corsi

Wishing for Those Good ol' 911 Days

Ellie had another seizure last night.  She stopped breathing for a couple of beats.  Which, as you can imagine, totally freaked me out.  We had to give her several doses of her anti-seizure medications before we could get the seizure to stop.  As all of this was occurring, I heard sirens screaming by as they raced down Washington Avenue.  I had the strange thought of wishing we were at the point of calling an ambulance.  Because when you are in the middle of witnessing a seizure a minute can seem like an hour.  And HospiceCare is not 911, so they will not have any sirens blaring to get to us super fast.  We have to get adjusted to not jumping in and doing doing doing right away.  A more leisurely, less urgent pace.   Right now she is resting and moaning.  

[caption id="attachment_3286" align="alignleft" width="300" caption="Ben started celebrating a long time ago!"][/caption]

At the other end of the spectrum, Mr. energy himself, Ben has begun preparations for a holiday he is calling, "Everything Day."  A holiday to celebrate all other holidays-dressing up (for the Halloween portion), a feast (in honor of Thanksgiving), a tree (for Christmas), Valentines (I think you can guess this one), and fireworks (4th of July).  He even has a countdown going until the big day (Saturday).  He is hopeful that the holiday will catch on and will be celebrated every weekend.

Sudden Bursts of Emotion

[caption id="attachment_3274" align="alignleft" width="300" caption="Sweetie Pie"][/caption]

What a roller coaster ride we are on!  The past few days have been great--Ellie awake more often even wanting to get out of bed to do burk (book + work).  However once we get her set up on the floor, she pretty much just stares at her books as she doesn't have the energy to really arrange them as she used to.  Early this morning, Ellie had a seizure and is now sleeping it off.   See what I mean--roller coaster ride. 

What has surprised me as of late is how I will suddenly be struck with an overwhelming burst of emotion.  A couple of days ago, I was at a step aerobics class when some of the women started complaining about how much they hated getting older.  Made me feel all Laura Linney about it.  I mean what a privilege it is to get to grow older.  I fantasized about to slinging my step across the room in frustration and anger.  Other times, I am suddenly inexplicably struck with grief--could be a song, a walk, a grocery store.  It's always a bit surprising the intensity and suddeness. 

Back in November, Ellie's stupendous teacher, Ms. Zwart, made a turkey poster for us to hang on Thanksgiving day.  (She also continues to provide us with meals and cookies.  Over and over again.  Yummy.)  On it we could add feathers of everything about Ellie that we appreciated.  Wanted to share some of those with you all.  And maybe as a reminder to myself to keep adding feathers of appreciation to my own turkey of life. 

" I am thankful for all of the love that the Kennedy family gives to everyone around them.  I feel so jilled to be around them.  Iam thankful for Ellie's positive words and caring actions.  Love, Love Brittany"

"I am thankful for all the times that Ellie has shared her favorite books with me.  Mrs. Zwart"

"I am thankful for Ellie's creativity and ability to spread joy and happiness ("jappiness") to all she encountered.  Mrs. Mack"

"I like thanks.giving! Do I like thanksgiving bkus I gto EAT new foods.  Ben"

"I'm thankful for big brown eyes and miles of smiles."

"She is so supercalifragilisticexpealadocious and makes everyone JILLED when we are with her.  She is an Angel bringing LOVE to this Earth. Agogo"

Piranha

[caption id="attachment_3267" align="alignleft" width="300" caption="Those Ben cheeks. So kissable."][/caption]

While I was at the gym this morning, a show came on Animal Planet about piranhas.  The adventurer studying them said that somehow the people living on the lake he was exploring find a way to live their lives with the piranhaconstantly underfoot.  They somehow find a way to carry on and live their lives.  When I first heard it, it struck me at how these Amazonian people could find a way to coincide peacefully with these animals, that on occassion will eat one of the tribe's children.  I am striving to find a way to live with our piranha, the upcoming end.  But today I feel grumpy and irritated and mean.  Like a piranha, but with less energy.   So perhaps today I am the piranha everyone else is trying to live with. 

The last few days have been similar in that Ellie is awake a few hours in the middle of the day when she is more alert and oriented.  She has a beautiful smile that she greets all who enter her room.  She seems comfortable (mostly) and peaceful.  And constantly coughing.  We are right now playing "office" as she peels her crayons, listening to the playlist I made of her favorite songs.  It almost feels "normal".  Which is what I would like just to feel normal for awhile.

Great big shout out to Ms. Mack for not only coming over for some reading Ellie time, but bringing some of our favorite things from one of our favorite stores, Trader Joe's.  You brightened our day.