Wondering at the wonder

[caption id="attachment_2932" align="alignright" width="300" caption="Pure joy"][/caption]

About a month ago, the Make-A-Wish volunteer coordinator asked if I might like to work on a wish.  I had taken a hiatus during Ellie's surgeries, chemotherapy and pregnancy.  I was truly honored that she asked me because there is an overflow of volunteers in Madison.  I requested that I be able to be bring Lotta with me to make it easier on Thom (and Lotta and ME since the "kitchen" starts to overflow if Lotta does not eat in awhile.)  It was agreed that this would be an acceptable solution. 

The little girl whose wish is being granted has a heart condition and is deaf and has difficulty walking, particularly long distances.  Her mom told us that she is always concerned if she gets something that she wants to make sure her older sister gets the same thing.  For example, when she goes to the hospital, she always gets a sticker for her sister too.  So when they started talking about her Make-A-Wish trip, the little girl was concerned that her sister would also get something special.  As we were leaving our meeting, the father of the family asked if he could help me carry some of my things.  He grabbed my leftovers and was about to take my backpack when the little girl grabbed it from him and put it on her back.  She was determined to help me carry something and would not take "no" for an answer.  Here was a girl struggling to walk and she just had to help me carry this back pack.  I made sure to go straight to the car because it didn't seem right to linger with this child weighted down with all my stuff (if you know me you know I don't believe in underpacking, ever.)  I mean the bag was practically bigger than her!

Sometimes I wonder what it is like to live in a body where the struggles are so great.  I have often wondered as of late how it feels for Ellie to wake up and suddenly be leaning to the left or right.  For drool to be pouring out of her mouth.  To have convulsions so severe that it interrupts her ability to complete a task.   In reality it is wonderous that either Ellie or the Make-A-Wish child are actually alive at this point.  And the thing that completely amazes me is that neither one of these girls seem to be particularly bothered or hindered by what would be viewed by others as a "lack". Both girls have such compassion and joy and love for those around them.  It is as if only part of them lives in this diminsion.  Perhaps the other part resides in a blissful place which they somehow find a way to share with the rest of us, if we let them.  How utterly fortunate I am to have had the opportunity to experience such greatness hidden in the disguise of  a "broken body".

Lotta Joy

Wednesday morning was a rush of frenzied activity as our alarms did not awaken us.  Ellie was crying because her legs were inexplicably hurting and she did not want to go to school.  Ben was being great at being 5, which we have discovered is characterized by being extremely loud.  Pretty much total chaos.  I looked over to where Lotta was propped on a chair and she had the biggest smile on her face.  It was as if she were enjoying an amusing morning show.

Last time I was at Saver's Thrift Store, a woman saw me and said, "Oh what a cute baby!"  To which I responded, "Thank you!"  The woman looked at me rather strangely and I realized she had actually said "Oh what a tiny baby!"  To which I could have responded with the age of my baby.  I decided I liked better what I actually heard from the first comment, so in my mind that is what I was going to stick with.  The first comment just felt better to me than the second. 

Lotta smells like freshly baked bread.  When I cover her up in Burt's Bees Lotion, she smells like freshly baked bread slathered with honey.  Yummy.  Her skin feels like silk.  When she sleeps, I feel like I should call up Anne Geddes to come do a photo shoot.  She looks exactly like all those baby photos she used to take.  Sometimes when Lotta starts to nurse, she lets out a contented sigh.  And I feel empowered to be a part of that sigh.  Lotta will look at you so intently when you talk to her you feel as if you were really heard, as if you just completed an hour of therapy or life coaching.  When she is awake, everyone but everyone scurries around trying to get her attention, make her smile, tell her a thing or two. And now to mske matters even better, she has begun to coo. 

Ben has already decided that when she is bigger, he and Lotta will be best friends.  When we walk around the neighborhood, anyone who does not comment on our baby is vehemently told by Ben, "HERE is a CUTE baby!!"  Something he is quite sure no passer by-er will want to miss.  Honestly it is hard to imagine that someone could possibly miss the cute right in front of them when we walk by.  Is there anything more delicious than a newborn, so full of hope and possibilty?  If there is, don't tell me because I probably won't believe you!

Win-win solutions

We went home from the hospital today!!  Her sodium is still a bit elevated, we will get it checked on Monday afternoon. 

One day at the hospital we were preparing to take a bath.  Taking a bath at the hospital is quite an undertaking.  The bath tub is a huge, deep tub in a room down the hall.  Ellie's port has to be wrapped beforehand because it cannot get wet.  Getting Ellie into and out of the tub is quite challenging.  After one of the nurses helped Ellie, she requested that a new tub be installed as it is quite nerve wracking watching Ellie get in and out.  The nurses who worked with Ellie were filled with patience as Ellie struggled to even stand she was so exhausted.  Even sitting at this point for Ellie caused her to grunt to maintain her uprightedness.  What impressed me was how the nurses continued to adhere to Ellie's suggestions.  Ellie wanted to count, starting with zero.  Every time Ellie needed to be moved, the nurses working with her started with zero.  Then Ellie wanted to add "Ready steady go!" to the commands.  The nurses agreed readily.  Afterwards, the nurses told me that they realized that if they agreed to counting as she wanted then Ellie would be willing to do what they wanted, namely taking a bath.

The alarm clock went off the other morning and Ben began to cry because he wanted to snuggle in bed.  I suggested he "snooze" the alarm and we snuggle.  A snooze snuggle.  After our 10 minutes, Ben readily and easily got out of bed in a much happier mood.  I pondered afterwards how I could have insisted we get out of bed immediately, but man oh man it was so much easier allowing Ben a bit of snuggle time to start his day.  In that exchange, I gave a little and got a LOT better start to my day.

making a break for it

When we were in the PICU last week, Ellie suddenly wanted to have liney chips (you know, the chips with ridges).  Well for some reason, hospital room service only has non-ridged, flat chips.  Ellie scoffs at those texture-less chips.  They simply will never do.  During one of our stays, I questioned whether room service could walk over to the cafeteria and pick up some Ruffles for us.  For some reason, which I cannot now recall, that was not at all possible.  So when Ellie requested chips, I knew that it was up to me to obtain those chips.  Ellie was sitting in a "cardiac" chair.  It is a big chair on wheels, with armrests, that can sit up as a chair or lay down as a sort of (probably somewhat uncomfortable) bed.  I strapped Lotta into her baby carrier and we made a break for it.  Unfortunately, the vending machine on our floor had no Ruffles.  Since we'd made it that far, we decided to go to the first floor to the snack bar.  Getting the chair off the elevator was more challenging than getting it on, as the wheels did not maneuver easily and became stuck in the elevator doorway.  Luckily, people seem to like helping pregnant women and moms with newborns.  And success!  The snack bar had liney chips (they have also started stocking more big as your head chocolate chip cookies just for Ellie).

On our sojourn back to the PICU, we ran into Peter, our oncology nurse.  He appreciates Ellie's jokes and words and uses them as an excuse to do what he loves, wholeheartedly laugh.  Ellie was busy telling Peter one of her new jokes or words when Peter let out one of his laughs.  Ellie's face lit up.  She had that wonderful feeling of tickling some one's funny bone.  Really, who doesn't love that feeling? Words fail to describe the power of the moment witnessing the two of them connecting.  It was magical, marvelous.

Ellie continues to do well today.  She is slightly colder than yesterday (96 degrees).  Just got news that her sodium has shot back up to 159 (normal is 135-145).  Endocrine rechecked for accuracy and found it at 168.  So we may or may not be heading home today.