January Blahs

 

January.  The let down month after all the holiday flurry.  When my sister has driven here from Memphis, she laments having to drive through Illinois.  IF only Illinois would gracefully step aside so she could cut off hours of driving.  I felt the same about driving through Kansas to get to Colorado as a child.  I know I know, both Illinois and Kansas have a LOT to offer.  They just also have a LOT of state to drive through.  THAT to me is January.  Somehow you have to get through the cold bleak month of January to arrive at February, one step closer to the first barely there whiff of spring in March (maybe, in Wisconsin, it is a safer bet to shoot for spring like weather in May).  And THIS January 13th marks the 10 year anniversary of Ellie's death.  We will soon arrive at a time when she will have been dead longer than she was alive.  As she would have pointed out, that's wange (weirdly strange). 

And then her birthday on the 26th when she would have been 21(!?!!??)  When I think about it, January is really such an excellent representation of Ellie's life.  It seems so daunting.  How will we ever make it through?  Then, it brings all these unexpected delights, along with the waiting and slogging through.  It has ALL the feels.  It's like the times when I suddenly felt so happy to be sitting in a hospital room with Ellie, when from the outside, that prospect probably only looked like stress.  Or the joy of making unexpected friends with the nurses and doctors.  This particular January has thrown the delight of Rine Ice at us.  Rine ice is ice formed on objects (in this case trees) from freezing fog.  When you look outside now, a parade of white awaits your eyes, an absolutely magical winter wonderland.  Just as I was bracing myself for the harshness and longevity of January, I am greeted with the wonder and beauty of nature.  

  

Sifferent

 Ellie created the word, "sifferent" to combine the "same" and "different".  I think it so perfectly describes our time now.  We think things will be the same, but in fact they are quite different.  Very similar in feel to "sappy" or sad + happy.  It's really about being able to hold two opposing ideas without having your mind blown.

Speaking of things that are sifferent, I thought I should take a moment to describe Lotta's birthday on August 15th.  Particularly important since the last blog was about Zibbi's birthday.   I don't want to be accused of favoritism (one of the worst "isms" within a family).  

Lotta's original vision for her birthday was a LARGE beach party, followed by a smaller slumber party.  None of which was happening because of Covid-19.  Lotta, as Zibbi did, regrouped and came up with an alternative "bunny themed" family party plan.  

I heard recently, that we make memories around things that are out of the ordinary.  Because every day is so similar right now, when we recall this time period, it may seem like one looong hazy day.  I set out to once again, make a memory for Lotta's birthday.    

What Lotta recalls most now about her birthday back in August, was how we were all sitting outside, when, suddenly, Benja started talking about something off topic (it was a code word).  We all went inside quickly (hopefully before she could notice).  We reemerged a few moments later singing "Happy Birthday" while all wearing brand new rabbit shirts.  She was surprised and delighted.  Nailed it (I'm not sure if I'm using this term correctly.)   

Relishing the Marvelous Mundane

Recently at a store, a little old lady walked by me, while saying, "I really like your outfit.  Those leggings are fantastic."  I stopped walking and looked her in the eyes and thanked her for reals.  I think SHE needed that moment of connection as much as I did.  I think since our regular Midwest friendliness is in shorter supply right now, when it does happen, boy howdy do I appreciate it.  I find myself looking people MORE in the eyes.  Out in public half our faces are obscured now by a mask, forcing our eyes to do more of the heavy lifting.  AND I find that with my family members, I am stopping and looking more into their eyes as we communicate, rather than half listening as I rush about.  I think that is the upside to grief, it makes you relish these "marvelous mundane" moments, knowing that no matter what, they will soon vanish.  Ultimately, I don't know if that woman in the store will survive this pandemic, I don't even know if I will, but at least we took a moment to appreciate our small time together.  I guess that's all we can do.  

Babette

When Ellie was around Lotta's age, I got fed up one day because Ellie once again, refused to wear her winter coat.  Suddenly, I decided I would become a different person, whose main job it was was to put on Ellie's coats.  Thus, our "staff" was born.  Ellie had a manicurist, a bather, a coat check person, really whatever needed to be done that Ellie did not want to have any part of could be accomplished easily with a staff member.

This week, I was feeling tired and out of sorts and it was bath time.  Lotta wanted to put on her beautiful easter dress given to her by Aunt Linda, while I on the other hand, wanted her to take a bath and get the marker she'd drawn all over herself off.  (I think she was going for a zebra look as there were many many stripes involved).  We were getting frustrated.  I gave the baby to Thom so that I could better deal with the situation.  As I arrived in the bathroom, I donned a "French" accent and introduced myself as Babette the Bather.  Lotta shook my hand, surprise showing on her face.  We then proceeded to have a lovely, fruitful bath, with me even being able to wash her hair.  Later, Lotta kept insisting on playing with "Ballet" (her name for Babette) because it had been such fun having a new playmate.

Our staff for Lotta has continued to grow as we now have Delilah the Dentist, Henri the male version of Babette, Hank the Hand washer....

The Attitalk

The Attitalk

Some of you may recall Ellie's "attitalk" or attitude walk.  It is accomplished by placing hands on the hips and walking with a bit of an attitude.  For some reason Lotta has begun to simulate the attitalk.  She however does not allow anyone else to do it, she's not going to play that game. Which probably only increases her attitude, thus making the walk even MORE effective.

Slappy Feet

Now that it is getting warmer, Lotta has discovered slappy feet.  Slappy feet, yet another Ellie invention, is when you slap your bare feet against the floor as you walk creating a clapping sound.  Slappy feet was fine when we were at home, not as favorable, however, when we visited friends who lived in apartments with living below neighbors.  Particularly with Ellie's nocturnal roamings...

Snow Angels

[caption id="attachment_5041" align="alignleft" width="300"] Ben and Lotta mount one of the snow piles after the BIG snow storm (lotta angel dust).[/caption]

Yesterday as we were walking from the bus stop, snow was lightly falling.  Ben said that he thought the snow was special dust being thrown by the angels from the clouds.  He thought that since it was almost Ellie's birthday she wanted to give us this gift of Angel Dust.  I informed Ben that the day Ellie was born, there was a huge blizzard in Chicago, maybe that was all of Ellie's angel friends reminding her who she really was.  No new snow today on what would have been Ellie's 13th birthday, but that didn't stop us from recognizing all the gifts she has given us!  We are sucky (so lucky!!)

 

Whatever you do do NOT panic

On our trip to Chicago this summer, we ventured to Navy Pier to visit our all time favorite children's museum.  Outside in the middle of a a square was a fountain which Ben desperately wanted to run through, as was being demonstrated by a gaggle of kids.  After years of parenting, we have learned this is the activity to do AFTER accomplishing all other activities.  Definitely a valuable lesson.

At the appointed time, Lotta and Ben were wholeheartedly playing in the fountain, while Thom and I sat on a bench entertained.  A couple of times Lotta would run to a different side of the square and look up, seeing a different set of adults sitting on benches watching.  She would begin to panic and yell, "Mama, Dada!"  At the same time, Thom and I could see her, and we would be yelling, "Lotta, we are over here!"  She was so busy yelling however, she could not here us.

It reminded me of how I think about my "invisible friends" (angels, spirit guides, ancestors, God) that surround me giving me all the help I could ever need.  But when I am in a panic, I can't hear their calls.  It's not that they aren't there it is that I cannot hear them.  I guess I feel like right now is my opportunity to pay attention to those voices, particularly that voice that I identify as Ellie's.  Somehow continuing to develop a relationship with her even while I can no longer see her.  Maybe in some circles that makes me crazy, listening to the "voices in my head" or my "invisible friends".  Guess I don't run in those circles.  Oh well.

Memory Sandwiches

Sunday, September 23 was the 2nd annual Madison Make-A-Wish Walk.  We signed up late and just couldn't quite get our act together to form a team.  Which was how I wanted it when we were two weeks out from walking, just a small family function.  Then on the day of the walk, I found myself wishing we had worked to create a team.  Last year we had a big turnout and we even thought we might win the largest team award. It felt as if Ellie had been forgotten this year, which was ridiculous, because as I said, I initially wanted it to be a small family function.  Nevertheless, I was missing Ellie fiercely, even her protests at having to walk, and especially her desire to tit tat (talk chit chat) with every single volunteer along the route.  I was in a funky space.  At the end of the walk, Ben somehow became Ellie, declaring he couldn't possibly go on.  Lots of crying.  Even dropping to his knees to crawl across the finish line.  It was highly dramatic, even more dramatic than Ellie would have made it.  Felt like a little tribute to her from Ben.

Today I was bike riding with Lotta strapped to my back, it was a crisp fall morning, all the leaves aglow perfect for riding.  I suddenly had the thought that right now it is my job to make "memory sandwiches".  So many things around Madison, around our home, events remind me of Ellie.  Make me yearn to be near her again. If I am able, I can start to build new memories on top of all the funderful, delicious memories I have of Ellie.   A memory sandwich would be creating a new memory over the old ones that are already there.  Thus creating, a stackable memory sandwich.  It made me smile thinking of how much Ellie would enjoy this concept, maybe not as much as a hug sandwich, but enjoyable nonetheless.

Last week, I dreamed I was staring into Ellie's big brown eyes, oh so wise.  And I knew in the dream what a gift this moment was and I knew that I didn't want to miss it and I knew that soon I would be awake and all this would disappear.  (A lot to know in a dream right?)  I continually have that feeling now as if I am driving in a car, speeding away from the time we had together. And I want to yell, STOP let me off, I want to go back.  Back to a time when I could see those big brown eyes outside of a dream, when I could hear all those silly made up words.  Back to insisting we go for walks together.  Back to reading and snuggling in bed for hours on end.  Back to finding crayon papers everywhere.  Back to having someone to peel the St. Vinny's stickers off of my purchases.  And I don't want to sound ungreatful for the time we had together, I just feel greedy wanting more.

As I was driving solo to Chicago this weekend, suddenly, I felt Ellie's presence.  It was as if she wanted me to know, "You haven't left me.  I am riding with you!"

 

Can You Feel MY Power?

Ben does not enjoy walking, which is challenging, since this is something Lotta and I do enjoy doing.  This summer we have been biking as our preferred form of transport (within a 2 and a half mile radius from home I mean I'm gonna have to get the 100 pounds I'm lugging home too, so I've got to save some energy for the ride home).  I strap Lotta onto me and Ben rides on his tandem bike.  At the beginning of summer I envisioned that by this point, it would be easier. Unfortunately, that has not happened.  What has happened is that when I am riding my bike solo, I feel like I am going incredibly fast.  I fell like I should be saying, "Look mom, look how fast I'm going!!"

On our bike rides, when we get ready to turn, I will put my arm out signaling our turn.  When I glance back, both Ben and Lotta are also signaling said turn.  Sometimes Lotta makes sure to signal with both arms, just to make sure.  Hills continue to be particularly challenging.  And boy oh boy do we ever have hills here in Madison!  As we struggle up hills now, Ben will start pumping his pedals hard and yell, "Can you feel my power?"  I just love that, that knowing how powerful you are, sharing it with those around you.

Our first summer in Madison I shared with my mom that I wanted to be Crazy Bike Mamma and just ride my bike with Ellie in her bike seat everywhere.  I think I've finally caught up with that dream and then some.

 

Sister Secrets

One of the wange things Lotta has been doing lately, is making funny faces, just like Ellie.  I don't know why.  She will suddenly, when she notices she has our attention start performing her routine.  Lotta continues to close Ellie's room door for her almost every time she passes by, Ellie would definitely approve.  It makes me feel as if these two sweet girls are somehow telling secrets to one another.

On the way to Zumba last week, I saw a little girl on the outside of the Y who for whatever reason, reminded me of Ellie.  Suddenly the little girl said to the adult with her, "Hey, I smell potato chips."  Which made me smile, because what did Ellie like more than potato chips (the liney kind of course).  Well, I suppose you could argue chocolate chip cookies.

Funny Ows

At one point, during Ellie's first round of chemotherapy, she had lots of pain.  It's challenging as a mom to hear your child in pain, particularly when you know said pain is caused by the medication you are giving her.  Ellie rarely if ever complained of headaches, even after brain surgery.  So I knew if she was feeling something, it had to be pretty intense.  It got to me.

Anyway, one day I could not take it any more.  So I told Ellie, why don't we think of the funniest ows we can.  For example, "Ow! This pillow is too soft."  "Ow! My eye lashes just touched my cheek."  "Ow!  I'm relaxing and watching television."  It was highly effective in distracting her and me from all those dreaded boo-boos (as Elmos would say).

Later on, we even turned it into a game at the hospital, trying to think of the funniest things we missed from home.  "I really miss our toilet paper holder."  "I really miss the trash and how stinky it gets when we haven't taken it out."  "I really miss that stain on the carpet in the bedroom."

Well, one day one of Ellie's friends was over (a grown-up type person).  Ellie suggested we play the "funny ows" game.  I don't recall right now why she suggested it at that moment.  When it was her friend's turn, her friend said, "Ow, I broke my leg and had to have a cast on for months."  We all sort of stopped, not really knowing how to respond.

The story from then on was how her friend did not quite understand the task at hand and how awkward that was.

Sappy (sadly happy) Faced Stickers

There was a point when Ellie took a short respite from peeling crayons and became interested in stickers.  Happy faced stickers to be precise.  She would peel the stickers and either put them in a book I'd given her for her sticker collection or she would put them on the wall beside her bed that I had covered with felt.  There was a day I gave her a pack of stickers and went to take a shower.  I came back into her room and she had taken all the stickers and unpeeled them into a pile.  Every single sticker was stacked in the pile on her lap.  I sort of gasped because this was not what I had expected to see upon entering her room.  Which in turn sort of startled Ellie.  She inquired whether or not she was in trouble.  I explained that I was merely surprised she had gone through all her stickers, when I'd left her, she had been in the process of slowly peeling a sticker and placing one on each page of her sticker book.  It was as if her brain had a sudden glitch and could not stop itself from peeling all those stickers all at once.  At the time it was one of those sad/funny (sunny?) moments with Ellie.

Several months ago, Ben and I devised a system to allow Lotta to get more sleep.  Before the system was initiated, Ben loved to wake Lotta up so he could spend more time with her.  As I have mentioned, Ben has become interested in making money to buy himself Legos.  Thus, every time Lotta is asleep, Ben has the opportunity to earn between 1 and 3 cents.  If Ben is completely silent and non-disruptive, he earns 3 cents.  Ben is highly motivated to be quiet now and Lotta has more of a chance to sleep and I am not constantly having to say, "TOO LOUD" in a too loud and naggy voice.  Win-win-win.

The way I keep track of Ben's daily quiet-ness is through stickers on his calendar.  Lotta has noticed me putting stickers on Ben's calendar and she has become quite enthralled.  Although she thinks they are band-aids and so puts them all over her body.  Wherever her pretend ow-ees are.

Recently I unearthed the felt fabric that had been hanging in Ellie's room.  All of the stickers were still attached.  Lotta had a grabulous (great fabulous) time peeling them off and applying them to her body.  It was as if the two sisters were working together on a project.  Made me feel both sad and happy or sappy as Ellie would say.  Sad, wishing that Ellie were here to contribute to all this stickery-ness, or most likely yell at Lotta for messing up her design.  Happy, that even across the expanse of time, the two sisters could connect on this unlikely project.

Favorite Words

[caption id="attachment_4813" align="alignleft" width="225" caption="She knows what she wants. And right NOW she wants to be naked."][/caption]

Remember how Ellie's favorite word was brilliant for awhile?  How very British of her.

We've discovered lately, Lotta's favorite word.

Me:  Lotta you wanna come upstairs?

Lotta:  No.

Me:  You wanna stay downstairs then?

Lotta:  Hmmm no.

Me:  Is your favorite word "no"?

Lotta:  No.

(Elicits peals of laughter from Ben.)

Reminds me of when Ellie and I used to tell a very small Ben, "Ben don't be such a baby."  Which made Ellie laugh because he WAS a baby for crying out loud! (Did I already tell you that story?  This is my 413 post and I can't recall...)

Chocolate is to Croissant as Veggies are to Fried Rice

[caption id="attachment_4790" align="alignleft" width="225" caption="A set of three in Minneapolis."][/caption]

Last week, Lotta, Ben and I biked up to our local grocery store, the infamous Willy Street Co-op.  While we were there we picked up some chocolate croissants for Ben and Lotta (I can't get enough of their apple pumpkin muffins right now with huge chunks of delicious apples.  Yum yum.)  As I have mentioned previously, Lotta's favorite part of the croissant is the chocolate and at the Co-op the chocolate is two little chocolate y bars hidden in a croissant cloud.  Lotta had uncovered the chocolate morsel she wanted and devoured it, quickly moving on to playing in the play area.  Ben sat with me at the table slowly eating his croissant while avoiding the chocolate (he likes his chocolate softer).  He proclaimed that his favorite part of a chocolate croissant was the croissant part.  I told him that he and Lotta were the perfect pair, as her favorite part was the chocolate.  Then I pondered how there was something that Ben and Ellie used to eat the same way, making them the perfect pair with that particular dish.  No matter how hard I tried, I could not recall what the dish was.  Ben remembered that he used to eat the veggies for Ellie out of her Chicken Fried Rice.  I was stunned and amazed that he remembered it exactly.  How did I get so lucky to have two perfect matches?

Curbside Voting is Available if Necessary

What a week.  Kind of emotional.  OK not even kind of a lot.  Nothing has "happened" per se.  Just that same old yearning, desperate missing of Ellie back again.  Tiresome and wearying.

Tuesday we had a recall election (you may or may not have heard about this).  I went to vote and as I walked into the cafeteria of Ellie's school, the place was empty save for a table full of people to assist voters.  It was like walking onto the set of American Idol, as if I were the contestant and they were the judges.  I immediately began to weep.  (I would not do well under the kind of pressure facing real contestants!)  Because Ben goes to the K-2nd grade elementary school in our neighborhood, we have not, as of yet, made any new memories in Ellie's school.  Anyway, a very kind gentleman gave me some napkins and told me that if I needed to I could do "curbside voting" if that would help.  When Lotta saw that I was weeping, she became scared and sad and she started to wail.  She is not a girl to leave me alone with my sorrow.  Reminded me of the nurse at the hospital who said she never let anyone cry alone (my sister thought she might not let anyone drink alone either...)  Lotta and I stood and cried for a few minutes, while I pulled myself together enough to vote. 

On Wednesday I brought lunch for our favorite oncology nurses.  It is always wange being near the hospital now.  And being in a somewhat weepy emotional state did not help things.  Oh how I longed for one of those days hanging with Ellie in the hospital.  I mean I know everyone thinks the hospital is so horrible.  And there were times just hanging, me and Ellie,

playing office, where all the housework is removed, all those extra distractions, that there was just this awesome energy, peacefulness in the room, as we both went about the business of creating busy-ness.  Me usually blogging.  Ellie usually peeling crayons in her bed. 

Then Thursday I was going through one of Ellie's toys, intending to give it to one of our friends who works with children with Autism.  As I began putting all the pieces back together, I realized, it would have been Ellie who would have taken all the pieces apart.  Sort of like crayons, she could not stand for all the pieces to be together.  I don't know why it just struck me as incredibly sad that her hands were the last to touch those little pieces.  And made me yearn ever more for her.

Lotta being holly-wood.

Then Friday, I was sharing some of this with my mom.  As I was sharing it with my mom, I felt chills, which to me, is my indicator that Ellie is close by (or it's January in Wisconsin).  It was as if Ellie were saying, "It's OK, I know you miss me.  It's OK."  Giving me one of her fantastically terrific Ellie hugs from the ever after.  Later I heard the song, "Brown Eyed Girl" on the radio which always reminds me of Ellie now.  Our favorite PICU nurse shared how she heard that song right after she discovered she was pregnant and felt like it was a message from Ellie, that girl with those bring brown eyes, so wise.

And in a strange way, at times, I don't mind hanging out in this slow tender space.  It feels like it makes me more aware.  More aware of the beauty of these moments with my children.  More aware of the beauty of Wisconsin in the summer time.  More aware and peaceful and appreciative.  So, I'm just planning on resting here until I'm ready to move forward. 

Thoughts on Mother's Day....(the 13th btw)

[caption id="attachment_4672" align="alignleft" width="300" caption="First attempt at annual Mother's Day family photo..."][/caption]

"Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body."  Elizabeth Stone

Sometimes I feel jealous of the younger me.  Not for the reasons you might think--youthful beauty, innocence, coolness (Thom would wonder, "Were you ever really cool?).  The other day I was sitting in the green room looking at the photos on the wall.  One of them was taken a few days after Ellie passed.  I am wearing a pink hat given to us by a hospice nurse that says, "jilled", snuggling up to Lotta.  As I looked at the photo it amazed me that I even took a photo so soon after Ellie passed.  Then I had that old yearning.  In that photo it had been mere DAYS since I had seen, felt, touched, smelled Ellie, whereas now it has been almost a year and a half.  How I yearned to be that younger me, the one who had so recently been in Ellie's physical presence.

[caption id="attachment_4674" align="alignright" width="300" caption="Angel watching."][/caption]

Recently, I drove past the funeral home that cremated Ellie, as I often do.  As I passed it I suddenly was struck, it felt as if I was literally punched in the stomach with the feeling I had the day the funeral home took Ellie's body.  The moment they carried her body down the stairs, I wanted to race at them, demanding that they NOT take my daughter.  At the same time, I absolutely knew how irrational the whole thought process was.  That desperate feeling engulfed me, making for quite dangerous driving conditions, as you can well imagine. Time continues to move at an odd pace.  At times it seems so long long ago when Ellie was with us and then it flips suddenly seeming so recent.

This last week, Lotta caught a cold.  Saturday was the worst of it, she was lethargic and couldn't keep anything down and started breathing in a wheezy way.  Growing up experiencing asthma I have an extremely low tolerance for hearing my children struggling to breathe.  Lotta progressively got worse throughout the day.  By 3am, as she lay shaking the bed in her attempts to pull in oxygen, I decided it was time to go to the ER.  What a wange (weird strange) time to go to the ER.  First of all because it is 3am, which to my way of living, is not a typical hour I am driving around town.  Second, it was wange to go to Ellie's hospital.  Somehow I felt as if I might encounter Ellie there.  I mean really all the experience's we had there, they should just rename the whole place.  Sheesh.  One of the first things our ER nurse said to Lotta as he put on her respiratory monitor was, "You're not in trouble".  Which, as you may or may not know, was one of Ellie's favorite things to reassure others.  Thirdly, Lotta is the exact age Ellie was when she was diagnosed with a brain tumor.  Everything but everything was so incredibly frightening to sweet Lotta (and sweet Ellie or "Swellie" as she would probably say).  Even putting the ID bracelet on, listening to her breathe, looking in her ears, were extremely upsetting.  All of it was terrifying.  It also amazed me how, particularly in the ER, where everything is URGENT, I can be talked into things like rectal thermometers, chest x-rays, which in the light of day seem CRAZY. As we were going through it, I had a moment of worry that this was going to scar Lotta emotionally.  Then, as we were leaving, Lotta was walking around, making friends with one of the nurses (just like her sister would have!)  Not a trace of what had happened left on her, except for of course that she was now breathing easier.  They are so resilient at this age.  AND I am greatful that we somehow survived Ellie's hospital experiences and that Lotta and Ben are getting to experience something different.

Honey

[caption id="attachment_4621" align="alignleft" width="300" caption="Sprinkling rose petals over Ellie's site."][/caption]

Over spring break, we took a trip to St. Louis, Memphis and on to Pranee (the beautiful, magical land my sister and brother-in-law own in the middle of Tennessee where Ellie's cremains are buried).  One day while I was getting ready in Memphis, I (in my head not out loud) told Ellie that I was available for a conversation if she wanted to tit tat (talk chit chat).  Suddenly I smelled honey.  I thought, rationally, I do have Burt's Bees Baby lotion.  But it was in a diaper bag across the room and had not been opened since the previous day.  Then I pondered what does honey mean?  What could Ellie possibly be telling me?

Then I got it.  "Honey" was the term of endearment she liked to be called.  When she was a tiny baby I called her all sorts of nicknames, since she couldn't protest.  The one that stuck was "sweetheart".  Well when she was maybe 4 or 5, she told me she preferred to be called "honey".  This was a challenging transition as I had heretofore been referring to Thom as "honey".  After

[caption id="attachment_4622" align="alignright" width="300" caption="My mom snuggles with Lotta Joy."][/caption]

much prompting on Ellie's part, I finally adjusted to calling her "honey" and sometimes "honey bunny".

Near the end of her life, I sometimes slipped and reverted back to "sweetheart".  One day my mom was sitting with Ellie, a day when Ellie was no longer verbal.  My mom called her "sweet heart".  Ellie scrunched up her face and shook her head vehemently.  My mom was shocked at such a strong reaction, when most of the day Ellie had been laying in bed, not moving, just looking around.  My mom asked if Ellie wanted to be called "honey" and Ellie responded with a head nod to the affirmative.

Wange huh?  Sweetheart would definitely be harder to send as a signal, don't ya think?

Seeing Ellie

[caption id="attachment_4589" align="alignleft" width="300" caption="Ellie and her siblings and her Aunts Sara and Amy"][/caption]

Once I announced that I intended to include Ellie in my life, I received two e-mails I wanted to share.  One is from our favorite PICU Nurse, Katie, whom I was able to have coffee with last week.

I forgot to tell you that I was telling a couple of nurses I was meeting with you. Kelly (I don't know if you remember her, but she cared for Ellie a lot) said to tell you hi. She then said that Ellie was just, magic, that there was such an aura about her. We couldn't quite find the words to describe her as we were reminiscing about her, but agreed she was just magical and we missed that. There has not been a patient since Ellie, nor do I think I will ever care for one again that was quite like her. I miss feeling her magical aura.

Then a few days later, I heard from Ellie's teacher, Sue Zwart (which was marked as having been sent at 4:39 am.  Told Sue it made me feel lazy "sleeping in" until 8am!!)

I've been reading your blog and of course have noticed how your life has taken on a new perspective.  It's a perspective I hoped you could get to in time.  It's always amazing to me how powerful our thoughts can be to our own happiness.  On Thursday a student, who loves fancy like Ellie, came up to the flamingo room from the library.  She had just checked out a book and brought it along with her. It was Purplelicious.  I was so happy to see that book and thought about how many times Ellie and I had read it together. I asked Lila if she wanted me to read it to her and she said, 'Yes."  I opened the book and there was Ellie's picture.  It was like, and I don't mean this in a bad way, that Lila wasn't really there but Ellie was.  When we were at Ellie's celebration in January you let us all pick out a hat that had been Ellie's.  I picked a tall multicolored Dr. Seuss looking hat. Well, it sits  up on top of my giant flamingo in my room.

Finally, I wanted to share a "dream" I had...

The other night as I was falling asleep, I suddenly had a vision of Ellie standing on the stairs.  It was so startling that it felt as if I was falling, the image was so real.  It made me feel so delighted and glappy to see her standing there again.  Then just as suddenly I crashed to ground with longing, yearning, wistfulness for her physically.   What a powerful mix of emotions it was right before sleeping, not too restful I gotta tell you.

Lost

On our trip to Chicago during the 13 days of Ellie.

Things changed dramatically for me after the 13 days of Ellie.  I have discovered that including Ellie means that I feel better.  It was the excluding her that felt so bad, pretending she never happened that felt off.  Finally, I feel able to focus on her presence, figuring out how to continue our relationship now that she is no longer in her physical costume.  I feel that time has been my friend, the wound does not feel as jagged and raw.  I could not have arrived at this point without having been on the journey.  A disorienting journey I had to take, getting adjusted to her physical absence.  I now feel as if our relationship is bigger than a mother/daughter relationship, our connection stronger than that.  I often feel her presence and know that she will assist me.

Lotta and I were at the mall recently for a play date.  As we were exiting the mall, I came across some tights (I have been on a mission to find wamr tights as of late, I mean I live in Wisconsin, what better place

Lotta, an excellent hider.

to utilize thick tights?)  I stopped to peruse, Lotta standing right next to me, rearranging socks.  I turned and she was gone.  Gone gone gone.  I looked around, shouting her name.  All the racks were at my eye level, so there was no chance of seeing a tiny girl walking around.  I began to panic, once again, wondering what happens if a barely verbal child is lost.  I took a deep breath and closed my eyes, asking for Ellie to help me out.  I found myself traveling over to a rack, when I looked under the rack, I saw 2 pairs of little legs hiding, silently amongst long pants.  It didn't even feel as if I had made a conscious thought, it felt like I was led.  Thank you, Ellie!

Recently, I was having a phone conversation with my brother.  We were talking about changes and loss, when he seemed to get uncomfortable.  He told me that he couldn't even compare any other loss with the loss I had experienced.  It took me a minute to figure out what the heck baby fire he was talking about.  Oh yeah, he's talking about Ellie.  Because I no longer consider Ellie "lost", she is a part of our lives.  I no longer feel continually lost as I once did, I feel ready to begin on the next leg of my journey...