Ben, or "Benny" as he calls himself

I know all of you second born children out there were wondering, so what about Ben's anti-festivus appreciation page?   (Aunt Suzanne in particular advocates for all the second borns out there.)  Thom and I are both second born children, so of course, we will make sure that Ben gets the recognition due him. 

[caption id="attachment_102" align="alignright" width="300" caption="Ellie falls asleep while snuggling with her baby brother"][/caption]

 When Ben was born Ellie was undergoing chemotherapy and the thought of having a newborn in our house at the same time was just unimaginable.  But man when he was born, it seemed like he decided to come at exactly the right time.  He was like another angel, diverting our attention from unwanted things.  He gave us all something wonderful to focus on.  We were all just smitten when he arrived. 

I recall the time when Ben was just a little guy, barely walking at all.  Ellie was in the hospital (even then, if he were awake he did not want to be in the hospital room).  In the hospital kitchen he saw these plastic bins that Ellie would regurgitate into and he would go over and pretend that he was regurgitating too.  It was both cute and sad.  When Ellie finally got to the point when she was walking around, he toddled over and gave her a huge hug letting her know how happy he was that she was back in action. 

1.  Fun is the name of the game.

The thing that I have learned and appreciate most about Ben is how he has fun anywhere, anytime.  I need not worry where I take him because he will find a way to have fun no matter what.  Target, the park, Ellie's school, the zoo, the Children's museum, the hospital, everywhere he goes he has a good time.  To him it doesn't matter if we are going somewhere, at our destination, or leaving, having fun is the goal, not the actual destination.   He is always such an excellent reminder to me that it is the journey to be enjoyed, not just the destination to be obtained. 

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2.  Those cheeks.  And that skin. 

Ben just has the cutest darn cheeks ever.  I just want to kiss them or squeeze them.  And his skin is indescribably soft.  (For Ellie, it is her beautiful, long lashed dark brown eyes that I adore most.)

 

 3.  Reconnecting.

After crazy comes to visit, as crazy often has this summer, Ben will hold out his little arms in "hug" position and tell me, "Let's reconnect."  And all of the crazy that I have felt suddenly melts away into nothingness.  He reminds Ellie & I both of reconnection time, because that is, after all, the best part of Crazy's visit.  Then, he's back to #1. 

4.  Sing a song/do a little jig

Ben and Ellie both love to sing.  Ben particularly enjoys singing the theme songs from his favorite videos (Peep and The Big Wide World, Charlie & Lola, Bob the Builder).  Recently he has started doing this silly dance where his legs flail out to the side in a highly comical manner. 

5.  His perspective.

Last spring there were several tornado alerts.  Explaining what a tornado is to a 3-year-old is quite challenging without some visual aids.  So we checked out lots of books and watched lots of videos to learn more about them.  Every time we would ride in the car, Ben would search the sky, checking for tornadoes.  Often it looked to him as if the clouds were begining to spin.  If you think about tornadoes or hurricanes or volcanoes, outside of the human perspective, they really are quite fascinating.  When I first told Ben about volcanoes, a large mountain shooting fire out of the top, he looked at me like, "You have got to be kidding me, that sounds like the most awesome thing I've ever heard of!!  When can we see one?" 

One day we walked out of our house and there was a young woman leaning against her car with the car hood up.  She told us that she was waiting for a tow truck.  Ben became extremely excited at the prospect of watching a tow truck do its work up close.  Then, to top things off she told us that after the tow truck came it would take her car to the mechanic.  Ben thought she was having about the most fun day ever.  A tow truck AND a mechanic.  All in one day?  The woman saw Ben's enthusiasm for something she was thinking of as a "problem" and suddenly it didn't seem so burdensome. 

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We live about half a block from the railroad tracks.  Seeing the train go by is one of the many highlights of Ben's day.  When we hear a train or the train signal, we race to the window or the front porch to watch.  I think of all the cars who are annoyed at having to stop to wait for the train to go by and the contrast of how much whooping fun Ben is having watching the same train.  When I told him that his little friend, Max, did not live near a train and could not watch the train from his apartment, Ben looked at me as if this was a completely unacceptable way for any little guy to live.  It's all your perspective. 

 6.  Comedian

So many times Ben, seeing Ellie's distress will try desperately to find something that would be amusing to her.  Sometimes it works, sometimes it doesn't, but it is so sweet that he tries to help his sister out of her despair. 

7.  Ben Kisses

Ben kisses are oh so sweet. 

There isn't a better treat.

He puckers his lips super big

Sometimes he does it with a little jig

His kisses make the appropriate sound

I love having many Ben kisses around.

Eeyore, where?

One sunny summer day a few months ago, all of us were at the hospital for numerous medical  appointments and a blood draw.  I was feeling a full dose of disappointment over all that had happened since Ellie's surgery.   Things seemed so much worse to me than they had been prior to surgery.  I wanted to scream and kick and cry and take back my decision to have the surgery. 

If I recall correctly, I had met with the dietitian that day to discuss Ellie's weight gain.   And when we weighed Ellie, I believe she had gained another couple of pounds.  Leaving me feeling SUPER CRAZY.  (This was the dietitian who at one visit while Ellie was eating a chocolate cupcake asked Thom, "So how many cupcakes does she eat a day?"  I was livid when Thom told me this because seriously how many freakin' cupcakes would I have to feed her for her to gain 20 pounds in 2 months.  {No, I haven't let that one go, yet, still workin' on it.} After our experience with Ellie, I know that I have no idea why or how anyone else's body looks the way it does, I just don't.)

But I digress, Ellie, Ben & I walked up to the elevator, me dragging around a major grumpy attitude.  Ellie looked up and said, "Hey, there's Eeyore."  Well, there standing before us was a man holding a balloon (I assumed the father), a woman (I assumed the mother) and a probably 15-year-old teenager (I assumed the daughter).  It looked as thought the girl had been in some kind of accident, her face was very bruised and bandaged and it did not appear that she could speak.  I thought for a moment how having something happen to your face would be hard for a woman at any age, but being a teenager would be especially hard.  I thought of how this might have been a sudden thing that happened and that this family might be sharing that feeling of disappointment over whatever it was that had happened to their daughter.  The father in particular had that giddy look you only get after being released from the hospital after an extended stay.  He looked around questioningly at Ellie's statement about Eeyore, until he realized that Ellie was referring to the balloon he was holding in his hand.  

The elevator arrived and we all stepped in together to ride down to the parking garage.  The teen-aged girl grabbed the string of the balloon and began to push it towards Ellie.  Her mom asked, "Are you sure?"  And the girl nodded "yes" vehemently.   I was so touched that someone who was facing such pain could still in the face of that reach out to another child and give what she had to give.  I looked her straight in the eyes and told her, "Thank you" because I wanted her to know that I could still see HER. 

My sister commented recently how it is amazing that so many people would look at us and feel sorry for us, but we are out in the world having "real human experiences".  She didn't think it was at all necessary to feel sorry for us because these amazing opportunities unfold before us all of the time.  I have to agree we are pretty fortunate.

Stop-n-Go

Stop-N-Go.  Do I even need to explain what Stop-N-Go is?  It has many names, depending on where you live--QuickTrip, Speedway, 7/11, Quickie Mart...Those convenience stores that just have an indescribable flavor all their own.  They are open when no one else dares to be open. 

We have a Stop-N-Go about a block and half from our house.  At one point in our lives, that was as far as Ellie had the energy to walk (now she can walk 2 and 1/2 miles!!)  Every night after dinner, she and Thom would take a Stop-N-Go walk.  And what would they get?  Snuggles of course, in the freezer section.  Luckily, as you all know they are free.  When Ellie came home from the hospital this last spring, again Stop-N-Go was our landmark walk-to place. 

When my dad came to visit a few years ago, he was trying really really hard to be a good guest and eat what was served.  Unfortunately, we don't eat much meat and I suspect that my dad doesn't eat many veggies.  One night I made squash soup and I watched as my dad tried so hard to choke it down.  Literally, it looked like he was gagging as he swallowed.  It was really sweet of him, he didn't want to hurt my feelings but his body really didn't want that soup anywhere near it, much less en route to ingestion. 

So, being a resourceful man, he would sneak off to the Stop-N-Go to get himself some nourishment.  Once he even ate a Stop-N-Go hotdog.  My first thought was of Homer Simpson at the Quickie Mart eating that super nasty old looking hot dog out of the special hot dog warmer.  

During another visit, my father enjoyed the buy 2 ice cream sandwiches for a dollar special.  Turned both my husband and my son into major ice cream sandwich fans.  Now when my dad comes to visit, Stop-N-Go (SNG) is the landmark he looks for signaling that he has almost reached his destination.  (He even wrote a poem about the store for Ellie, he has become quite the poet since retirement.)

Our Stop-N-Go is special for another reason, because it has a limited service post office inside (cash only please).   We have utilized this service many, many times recently. 

Every time we go into SNG, my children have a routine that they strictly follow.  Ben begins by taking a gander around the store.  Being a small store, I don't have a problem with this.  His older sister however, does not appreciate his gandering around the establishment.  Ellie begins by yelling, "BEN!"  And gradually increases in volume.  Often Ben likes to rearrange their cups too, which results in further chastisement by his older sister. 

Now what I like best is this.  The people who work at SNG are completely entertained by my children's routine.  They sort of just sit back and smile and watch the whole thing unfold.  Ellie will tell the person who is checking us out how Ben is driving her crazy and the check-out person will say, "Yep, that's what brothers are supposed to do, particularly younger ones."  They simply allow my children to be in their "crazy space" for a minute and they watch amused as Ben & Ellie do their little SNG dance.   It makes it so much easier to go there knowing that we will not be disturbing anyone with our schninanigans.  Every time we have been in the store, the workers have treated my children with the utmost respect.  I admire the workers' abilities to stay peaceful and calm amidst our craziness, and I would like to be more like them when I grow up.  Because I don't think crazy can live in a peaceful, accepting, loving environment like the one they have created in, of all places, Stop-N-Go.

A few of my favorite Ellie things...

[caption id="attachment_37" align="alignleft" width="300" caption="Sweet Ellie at 4 years"][/caption]

Do you remember that Seinfeld episode about Festivus?  It was a holiday created by George Costanza's father (I know any of you Seinfeld fans will correct me if I'm wrong here).  My favorite scene is when everyone is sitting around the dining room table and Mr. Costanza says, "Now is the time for the airing of the grievances."  Basically, your opportunity to tell everyone else at the table what you didn't like about him/her.  I decided to do the opposite and focus on all of the things I like about Ellie and what she has taught me through her brief stay with me thus far. 

1.  Cherish every moment.

Several years ago, Ellie had a seizure while in the hospital.  Thom was in the hospital bed with Ellie when she started having her seizure and Ben (who was under a year at the time) and I were asleep in the bed next to Ellie & Thom's.  When Ellie started to go into a seizure, she was administered Valium which then caused her to go into respiratory arrest.  Suddenly, our once peaceful, dark room was filled with people and noise (and Ben slept on).  The whole thing seemed completely surreal, even now it is hard for me to imagine that it really truly happened. 

After she was revived, she was sent to the PICU for monitoring purposes.  Ben & I were sent to a separate sleeping room in the hospital run by Ronald McDonald House.  You can imagine how much I didn't sleep that night, wondering how Ellie was doing, what was happening in her room, but not wanting to wake Ben to go check. 

I just really really really needed to tell someone so that the whole experience would seem somehow more "real" than it did.  I waited and waited and waited.  Finally, at 5am, I called my sister to tell her what had happened.  Ghany (her husband and an anesthesiologist) answered the phone and was pretty nonplussed by the whole thing.  In the fascinating world he resides in, respiratory arrest is not that big of a deal. 

Later that morning one of our doctors and her nurse practicioner came to the PICU to check on us.  I could tell from the way she was asking the questions that there was a concern of possible legal action that we might take.   Litigation was the furthest thing from my mind.  I remember feeling so fortunate to have another day to spend with Ellie.  When I told the doctor and her nurse this, we all teared up.  It was one of those moments that cannot adequetly be put into words.  Words kind of stupid it down for some reason. 

2.  Let it go.

Another hospital stay and Ellie was getting an EEG.  Two women where in her room spreading the icky sticky gooey stuff to attach the electrodes to her head.  Ellie abhors gel, lotion, soap, paint, anything oopy and goopy.  Then, they were blowdrying her hair.  Ellie abhors any loud noises, but especially blowdryers and vacuam cleaners and loud little brothers.  As you can imagine, it was pretty much a nightmare situation.  Ellie was yelling her gooped up head off as if she were being tortured (she was). 

One of the EEG women kept telling Ellie, "It's not hurting you".  Until finally, I said, "Maybe it is hurting her, even if it is not hurting you."  Because really do we want to get into an argument about what hurts somebody else?  That's like arguing whether a room feels hot or cold with someone who feels hot or cold.  But I digress. 

As soon as these 2 women were done, Ellie immediately stopped yelling and started chatting them up.  I mean I was livid, ready to get violent and wanted them gone from my life.  But for Ellie the whole thing was over and done and she was ready to make friends.  It was beyond forgiveness, because she didn't forgive she just let it go.  Completely and utterly.  Not to be nice but because she likes making friends and that was the opportunity presenting itself. 

3.  It's about me.

Ellie and I often have this conversation about Ben, "Ok, Ellie this is not about Ben this about YOU.  What can YOU do to be peaceful?"  I want her to feel empowered and know that even if she can't change what is happening around her, she can change what she thinks and then what she feels. 

Example #1: Every time we get into the car, little Ben likes to climb in the front seat and push all the buttons and pretend that he is driving the car.  Well, Ellie is ready to go, right now.  Typically, this quickly deteriorates into Ellie screaming and crying for Ben to get in the backseat.  We talk about how he won't want to get in his carseat if there is yelling in the back.  We talk about how if Ellie can somehow find a way to have fun in the backseat, Ben will actually want to join her. 

Example #2:  On our walks home from school, Ben often stops along the way to hug or scratch a tree (they are itchy and cannot scratch themselves), walk through leaves, walk across large rocks, jump down steps, pick up some sticks, find a feather.  Again, Ellie is ready to go home RIGHT now.  She is tired and cannot wait.  Today we were discussing how if Ellie spends the whole walk focusing on what she doesn't like about Ben and what he does that she doesn't like, then she is going to feel really really bad. 

Well, when we arrived home, I realized that while I was telling Ellie to focus on what she liked about Ben, I was focusing on what I didn't like about what Ellie was doing.  Daganabbit!  Foiled again...I know that if I could be an example of appreciating and loving Ellie, even when she is not doing that to Ben, it would be even more powerful than me continually telling her.

4.  Spread your love.

One thing that is truly amazing about Ellie is her ability to easily tell others that she loves them.  There is no hesistation in her proclamation.  When she says it she means it.  She loves to talk about what she loves about the people in her life (besides her brother sometimes, see #3).  She loves to talk about how much she enjoys seeing and tit tatting (talk + chit chatting) with the people in her life.   When I ask her what she enjoyed most about school, she inevitably says that she enjoyed spending time with the adults there.  For her it is the relationship, the connection that is the most important thing, not what she has accomplished. 

5.  Giggles

Ellie loves a good joke, or a word said in a funny way or funny facial expression.  She is an easy laugh.  Sometimes she even just sits in her room laughing.  Her laughter is the best music. 

6.  Salt is really important.

The summer before last, Ellie spent 2 weeks in the hospital because of low salt.  Every day, Thom and I were like, "Can we go home and give her a bag of chips for crying out loud??"  It turned out she had cerebral salt wasting (not to worry, I have informed the doctors that this is an incredibly awful name sounding as if life as you know it will end very soon.)   We also uncovered during our last hospital stay that salty's friends are also highly important, they are known collectively as the electolytes.  It is amazing how something that seems as insignifant as salt can really impact the funtioning of your entire body.

Keeping up with Debi

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Another not so pretty do-over story

One day, Ben & Ellie & I went to the library. It was a library that Ben in particular loves because it has not one, but (drum roll please) TWO train tracks. And a fish tank. And a ramp to run, I mean walk, around many many times.

We were at said library, when I suddenly realized that we were supposed to be home giving Ellie a feeding (meds in her gastric tube). Plus,  Ellie was starting to feel tired. The library was pretty crowded that day, so Ben hadn’t had much of a chance to play yet. You can imagine how desperately Ben wanted to stay at the library. When I suggested we go home, he adamantly, loudly refused.

Now usually, I can tell him to tell me when he is ready and a few minutes later he will suddenly say he is ready. On this particular day, however, this trick did not work. I felt as if it would be so great to have two of me right then (each with a car of course--maybe one a convertible even, it was a nice day). One of us could go home with Ellie; the other one could stay at the library with Ben. I hate that feeling of having to “choose” between my two loverly children. I know they hate it too.

I wondered, is there a way to do this that I am somehow not aware of?? How in the world am I supposed to do this for crying out loud? To add to the whole brew-haha was the fact that not only was Ellie getting tired, but Ben was already tired. Finally I told Ben firmly, in a very parental voice that we had to go.

Which meant Ben started running through the library screaming and crying as loudly as possible. Which led to Ellie beginning to scream and cry and walk in the opposite direction around the library. I told Ben that if he couldn’t be quiet in the library then we wouldn’t be able to check out what we had found. Which, of course, made him even more furious. He was so angry he tried to kick over one of the plants near the doorway.

As I mentioned, Ellie is wandering around the library crying, loudly. Finally, finally, I collected both my children and we headed towards the car. I say, “we” meaning Ellie & I, Ben decided he needed to explore and lay down on the library lawn.

Finally, finally, I manhandled (or womanhandled) Ben into his car seat, which is almost entirely impossible to buckle with a bucking toddler in it. We made it home with me livid in the front seat.

That night at dinner, Ellie was telling her Dad about the “not fun time at the library”. How 'crazy' totally came to visit. Suddenly Ben said, “Maybe next time, I no scream”. “Maybe next time, I no kick over the plants.” “Maybe next time I no hit the other kids.” (I didn’t mention the hitting did I? Couldn’t bear to relive that too…) Rather than re-hashing what had happened, he wanted to talk about what could happen the next time we went to the library. I said, “Well, I am grateful that the library has never kicked us out, even as many times as we have caused a major scene there.” We decided then and there that we would do a “do-over” the very next day.

The next day, I summoned all my courage and we set off once again to the library. Thom suggested that we just give a shout out when we entered the library “We’re gonna keep on comin’ back ‘till we get it right!” On the car ride we discussed how we wanted our library visit to be this time—fun, peaceful, quiet, easy. And guess what, miracle of all miracles, it was! For a while after that, every time we would go to a library we would discuss beforehand what we wanted to have happen when we were there.

A Do-Over

 

It was a sunny, crisp fall day as Ben, Ellie, & I walked to school.  Ellie was laughing about something Ben had just said or done (he is a comedian in his spare time, particularly for his sister).  When suddenly, Ellie fell flat on the sidewalk.  I mean, flat, on her face lying on the sidewalk. 

 

My first, completely crazy thought was that she was having a seizure.  (Crazy because she never just falls down when she is having a seizure, there are always fun pre-cursors like throwing up or wetting her pants.)  Then, I realized she had tripped over a gaping crack in the sidewalk.  I helped her pick herself up, and dusted her off, asking what she had hurt in her fall.  She said that she had hurt her knees and her elbow.  The amazing thing was that she only had a slight scratch on those areas. 

 

Before Ellie even finished crying, she asked if she could do a “do-over”.  A do-over is when you get a second chance; you get to try again (we have had many do-overs during our summer of Crazy, 2008—a future blog).  We continued our walk, but this time, three-year-old Ben insisted on finding every crack in the sidewalk, and straddling it while yelling, “Watch out, Ellie, there’s a crack!!”  Although I wouldn’t wish for Ellie to fall down ever, seeing the resilience and ability of my children to help themselves and one another was amazing. 

An ode to the sick gods to beg for their mercy...or my first blog ever!

My sister and my husband have been encouraging me to start a blog.  By encouraging,  I mean my sister ends phone conversations by saying, "Blog me".   And my husband secretly set up a blogsite (is that what you call it?) all ready for my submissions and "my public" .    My reluctance to succumb to such unbridled enthusiasum is because I want my blog to be oh-so-perfect that everyone ohhs and ahhs and can't imagine what else I've been doing with my time.  Also, I worry about being completely and utterly boring.  I mean something may be incredibly fascinating to me and possibly Patrick Kyle (my brother-in-law who is so charming he makes me feel fascinating even when I'm probably not) but possibly not to another human being on the planet.    But lately, I have had so many HUGE thoughts that I can hardly sleep at night as my thoughts say, "blah diddy blah blah blah".  And as much as I tell them to be quiet, they just will not listen to me.  And believe you me when there is an opportunity to sleep I should not be doing anything but SLEEPING.  Not thinking not winking not blinking, not thinking about how I should be sleeping and I am not.  Not thinking about thinking about how I am not at all sleeping.  Not thinking about thinking about thinking about how I am STILL really not sleeping.   So, I'm going to just jump right in on what has been utmost in my thought this week.  Boring, mispelled, stinky and all, here goes...   This week, I have been experiencing a cold.  Or as I have been calling it, "exercising my immune system".  I was thinking about focusing on what I like about being sick.  (Is that sick to focus on what I like about being sick?? Aren't I supposed to just hate it and get it over with??)  1.  I love the freedom of not caring how much television we watch in a day.  2.  I love the freedom of not feeling as if I should be doing housework or food preparation 24/7. 3.  I love the freedom of not feeling guilty for sitting down or even lying down.  4.  I love the freedom of not feeling hungry every 3 minutes (replaced by being thirsty every 3 minutes, but still).  5.  I love the freedom of totally focusing on the adorable, funny little people residing in my household b/c that is all I have the energy to do. 6.  I really look forward to that day very soon when I will suddenly feel "all better" and the "all better" will feel even better than the "all better" before I exercised my immune system because I had the contrast of not feeling so well.     Perhaps when I am done exercising my immune system, I will recall the first 5 items and practice doing them even when I am feeling well.  Now that would really be amazing.