Bit of Ben

Following are stories that the "grands" (aka grandparents) and possibly a few other close friends and family would thoroughly enjoy.  I've realized if I share them with almost anybody else, they will force a polite laugh and pretend as if my story is actually interesting to them when it actually is not.  Good thing I have a blog so all those unsuspecting souls I run into on a daily basis are spared.

Ben informed me about a week ago, "You are the very best mommy in the whole wide world."  Then he gave me a huge hug.  It is these moments of unbridled enthusiasm that make me adore having a three year old in my life.  

One day our cable company repair person was sent to fix our cable, apparently our whole block was out of cable.  Well, when the cable person came, Ben was so excited to watch him at work.  He loved all of the equipment he had and that he drove a truck.  Even better, the repair person got to climb up a ladder to look at the cables.  When the cable guy came down from the ladder he informed us that it was a bigger problem than he had anticipated and that another repair person would have to come and do the repairs.  Ben asked him, "Do you have to have a girl come to fix it?"  He didn't mean it in a taunting kind of way, he sincerely seemed to be under the impression that if this guy couldn't fix it then a girl could.  What a wonderful world Ben lives in where girls are able to fix all the problems when the boys are unable to do so. 

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The other night, Ben came into the bedroom and used his very first contraction.  He said, "I didn't know there was a bed and window in here."  I didn't say that his first contraction sentence made any sense, I just said that he used it. 

When Ellie first started walking for exercise this summer, we bought an odometer so we could track how long we were walking.  One of the first times we used it, Ben wondered why Ellie was wearing a thermometer.

Every since Ben first started saying, "Grandpa", he has been confused about the distinction between "GrandMA" and "GrandPA".  So Grandma would say it so he could hear the difference, "No, I'm GrandMA."  Until Ben started saying it like that, "GrandMA."  Now, however, he is back to saying it the way he used to, "Grandpa & Grandpa".

[caption id="attachment_155" align="alignleft" width="300" caption="Ben in his favorite outfit."][/caption]

As we were riding in the car the other day, I asked Ellie where she was born.  She replied, "Chicago."  Then, I asked Ben where he was born.  He replied, "I don't remember", as if he didn't recall the actual day he was born. 

Ben & I have been discussing what happens when you eat food.  How the mouth mashes it up, how it goes down the esophagus, into the stomach, etc.  One day he started choking on some food or water and I asked him if it had gone down the wrong pipe.  He responded immediately that it had gone down, "The poop pipe."  Well this was a pipe I was unfamiliar with, and I didn't realize that such a pipe would actually take food in rather than putting food out.

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A couple of weeks ago, I wrote a blog that I was anxiously awaiting feedback from my husband.  I repeatedly asked my beloved throughout the day, "Have you read my blog?"  Until Ben chimed in and asked, "Why daddy no eat him log?"  For some strange reason Ben thinks that you put a log on a fire is to cook it up and eat it.   We've never actually eaten logs, but I guess he'll keep waiting for that particular meal.

Ben refuses to use his spoon or fork in more than one food.  If I suggest he use the spoon or fork already next to his bowl or plate, he looks at me in disgust as if he can't believe I would suggest such a thing.  Now our dishwasher is constantly full of flatware.  Our small spoons seem to be always dirty.  I think he misunderstood when he joined the Kennedy family which branch we are.   

Ohmygosh, Josh, it's your birthday!

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Perhaps you would see my nephew, Josh, as a champion soccer player (good going!)  Perhaps you would see him as a referee or an electric bass guitarist.  Perhaps you would see Josh as a skateboarder who refused to give up even after numerous injuries.  Perhaps you would see Josh as just a really great, adorable kid.  The guy next door.  I see Josh as the boy who initiated me into being an aunt.  This blog is dedicated to him on his 15th birthday (October 30, 2008). 

When Josh and I first met, I was young (25), he was younger (2).  At the time he enjoyed playing drums with his silverware on his plate.  Even though he was young, he could already do that thing of rolling the pasta noodle onto your fork (which I still can't do properly).  He is the only of my nieces/nephews to have attended my wedding (and good job being quite during that by the way!)  Saying "spaghetti" instead of "cheese" during a photo shoot would give him the giggles.  And he called me Aunt DeVi.  Because Josh was such an absolutely awesome nephew, he made me look good as an aunt.  I honestly cannot say that I would have decided to continue with my aunting career (now numbering 10), if it had not been for such an auspicious start with my nephew Josh. 

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When Josh lived in Munsee, Indiana, we would go visit him for the weekend and man-oh-man would I miss him when I returned home.   Partly because I just had so much fun hanging out with him and partly because I knew that he would be completely different the next time we visited.  One of my favorite memories was the two of us sitting on the sofa together looking through catalogues, deciding what color shoes or shirts we thought would be the nicest, while his father wondered what the heck we were doing.   Another favorite memory was teaching him how to make his action figure do a kick-ball-change.  These are the types of things only an aunt can teach you really.

[caption id="attachment_298" align="alignright" width="225" caption="Josh in China, yes China!"][/caption]

Thom was recalling a time when we lived in Chicago and Amy, Mike & Josh came for a visit.  Well, Josh was hanging his head out of the window to greet us.  Mike did not realize that Josh was doing this activity and began to roll the window up from the front seat (one of those new fangled automatic window openers I've heard talk about).  Josh not realizing he should bring his head back into the vehicle suddenly had a very stuck head.  Which brings me to an oh so important life lesson, many things may not seem funny now.  But as time passes, they become hilarious.  Very important lesson, particularly for those sometimes awkward teen years (please see previous blogs for numerous examples of this lesson).

One Thanksgiving, Josh and his family of 5 drove all the way from Richmond, Virginia to Madison, Wisconsin to spend the holiday with us.  (I know, WOW!)  At the time, Ellie was undergoing chemotherapy, so we were not traveling much and we thoroughly appreciated a visit for the holiday.  Thom, Ellie, & I had just been to the hospital that morning for chemo and as we were getting into my car, my keychain broke.  It was a keychain that said, "London" on it and because of my love of British things I was saddened by such a loss.  (I don't know why but they don't have many "London" keychains in Madison.)  Anyway, when I started to ask Josh what he liked to do, he told me he liked to make keychains.  That is the kind of guy he is, he shows up just at the right time with exactly what you need.  To this day, I still have a blue and yellow keychain made for me by my nephew Josh.  It was the only keychain that could possibly replace my beloved London keychain.

[caption id="attachment_281" align="alignleft" width="240" caption="I see Josh, Ben sees cars"][/caption]

It has been amazing to watch Josh blossom from an adorable toddler into a thoughtful teenager.  He is sensitive and smart and oh-so-likable.  The last time we were all together, last Thanksgiving, he would listen as the adults were talking.  He was really listening, not just staring off into space acting as if he were listening.  Really listening is one of those super important traits that is so often undervalued and I am glad to see that Josh is so good at it. 

Ben just adores his cousin Josh, which is funny because Josh is not all that interested in Ben.  I mean he doesn't NOT like him.  I think it's sort of a "cat" thing.  Because Josh is not trying really hard to play with Ben, Ben really wants to play with Josh.  However, Josh and his brother Sam did teach Ben how to wrestle, one of Ben's very favorite activities. 

[caption id="attachment_283" align="alignright" width="300" caption="Sam & Josh teach Ben how to wrestle."][/caption]

Even though I don't get to see my nephew Josh or converse with him nearly as much as I would like, I feel happier, sunnier knowing that he is around and a part of my family.  I feel so greatful that Ellie & Ben will grow up having him as a cousin.  Because even though I get the privilege of calling him my nephew, they get the opportunity to know him as an older cousin, someone to look up to.  Thanks Josh, for all that you have contributed to our family.  I am so looking forward to watching all that you have share with the world unfold.  Happy Birthday!  We love you!

What would Ellie want?

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So here is my favorite hospital e-mail I sent out during our last hospital stay.  The e-mail just flowed out of me at the time and as I read it now I feel completely amazed.  Amazed at Ellie, amazed at her body's ability to overcome, amazed at all the wonderful support we had while she was in the hospital, amazed that we all survived to blog about it. 

At the time I wrote it, Ellie was intubated and sedated after her severe seizure during her second hospital stay.  She developed pneumonia in her lungs during the seizure, so the tube was helping her to breathe.  We had just discovered that Ellie was experiencing Diabetes Insidious, which is basically where you are urinating out your water (not diabetes that you can't eat cake, though, thank goodness!!)  Here's the e-mail I sent: 

Hey all-- It has become very apparent after our last experiment with vasopressin that her body is not producing it at this time.  The plan right now is to do an MRI in the morning just to get a clearer picture of what is going on in her brain (and to do it while she is still under sedation).  She has been more restless with the sedation the last 2 days, coming out of it, trying to sit up, opening her eyes.  So it actually seems like a good time to be discussing extubation.  Her lungs are looking better and she continues to be weaned from the tube to her own breathing.  The plan is to extubate her tomorrow afternoon (unfortunately during my shift at the hospital, I think this would be better job for Dr. Daddy.  I guess I will just have to call in Super Mommy to do the job.)  

[caption id="attachment_137" align="alignright" width="300" caption="Giggles"][/caption]

The entire endocrine team at the hospital sat around for an hour discussing Ellie and exchanging ideas of how best to treat her.  That is pretty astounding having all of these brillant minds collaborating on our daughter.  Over the next few days the endocrine team will be coming up with the amount of sodium, water, and vasopressin (through the G-tube, Thank God!  They were talking about using a nose spray for the vasopressin which I didn't think Ellie would appreciate at all AND would encourage Ben to stick things up his nose...not something we wanted to deal with.) 

So everything is moving along here.  Before we were in the hospital, we had Ellie's sodium level checked.  It came back that she wasn't needing as much sodium as she had needed prior to surgery.  I shared this with Ellie and she looked at me with those eyes filled with wisdom and said, "Now, why would that be good?"  What a response.  Because to her it really doesn't matter if we give her more sodium or less sodium through her g-tube.  Our goal is for her to feel good and whether that means giving her sodium or water or vasopressin or yellow jello it doesn't matter.

[caption id="attachment_238" align="alignleft" width="300" caption="Squishy cheeks"][/caption]

One day when I was with Ellie in the hospital she started to feel nauseated.  You know how awful it is to feel nauseated (and if you are pregnant, I am sure you have had some recent experiences with that feeling.)  She said to me and to our rockin' friend Cynthia, I want EVERYONE to feel good.  Even in that moment when she was feeling crummy she continued to want EVERYONE to feel good, not just herself.  I say this because I know even though she is sedated right now she wants YOU to feel good right now even while she is in the hospital.  Ellie is amazing and strong and stupendous and fabulous.  I know seeing and hearing about her going through something like this can be maddening and saddening and a whole myriad of crazy emotions.  I invite you to fully feel that sadness, disappointment, frustration, anger or whatever combination you may be experiencing.  Then, I invite you to have the most fabulous best love-filled day that you could possibly have.  Because that is exactly what Ellie would want you to do.  She would not want anyone wallowing in worry or fear or sadness in her name.  She would want everyone to be hugging and loving and having the most favorite day that they could. 

Shine on--Debi

Appreciating the Appreciator

In order to complete the cycle of appreciation I thought it prudent to acknowledge Debi.

Debi has already set our stage so I don’t need to do that, which has a definite advantage for me.  As she has pointed out (and quite frankly let me off the hook with), I don’t necessarily remember all of the same details that she does.   So off we go…

1.     Humor
I think this is the best of us.  Debi has a great sense of humor which is very compatible with my own.  It is really super that she gets me and my jokes.  This is especially nice when no one else does.  She also has the willingness to be goofy and not just for the kids.  She is even willing to high-five anyone at the hospital to get things moving.  I think she is getting funnier too.

2.    MY Best Friend
If she thinks I am her best friend then she is really, really mine.  She is the person I want to be with more than anyone else in the world.  That sense of humor thing comes in handy here too.  And, she is definitely my “first to tell” person.
That whole number thing is not working for me anymore.

She makes a great “first to tell” person because she is excited.  She is excited about a lot of things and this flows easily into excitement about my things (unless it has to do with football).  I know that her excitement helps us move into more and more exciting things.

Along with her excitement comes her commitment, especially when it comes to the kiddos.  She is a wonderful Mom who is in their corner even if that means telling a doctor that they are just wrong.  She does all sorts of research when it comes to the kids, everything from all that medical crap to the best shoe (in the appropriate color, of course).  I know that all moms love their children so it is hard to say how much she truly loves Ellie and Ben.  She is helping them both to evolve with incredible patients and a willingness to try stuff.  Every day I get a report of the day and there is often some new technique or “trick” attempted to keep the joy present.  She knows what they need and does her darndest(sp?) to provide it.

I also want to mention Debi’s strength; she had two kids naturally for goodness sake.  She/we have obviously been through some stuff but Debi helps us all bounce back to beyond “normal”.

Finally, I asked Ellie what she appreciated about Mommy and she immediately said “Fun!”.  We all have fun together and none of this is worth much without that.  Debi is fun.

So that is my appreciation (before she be dead) response and, if I may, encourage your comments of the same.  Debi, btw, LOVES comments, hint, hint.

Pure Magic

[caption id="attachment_230" align="alignleft" width="300" caption="Ben in the leaves (10/07)"][/caption]

This morning was one of those perfect fall mornings.  The air was a bit crisp, the sky was bright blue and the fall foliage was in full bloom.  Ben and I went to Orton Park, a park we often frequent while Ellie is in school.  This park is surrounded by big beautiful Victorian homes and just past one street of homes is lovely Lake Mendota.  Within the park is a gazebo (almost) straight out of Sound of Music.  Tall trees are sprinkled throughout the park.  As Ben & I were playing, I looked around and had that feeling as if I were in England.  (England being one of my favorite places, it was a most pleasant sensation.)  The trees are so tall in this park, I hardly feel as if I am still in the "new world".  The game that Ben & I played was to pile as many leaves as we could below the super slippery slide and let Ben crash into the pile. 

You know when you suddenly have that feeling where everything just seems so fantastic and beautiful and you are so greatful to be exactly where you are in that moment and you wouldn't change a thing.  It felt like that moment in the opening credits of the Mary Tyler Moore show when she spins around and throws her hat up in the air as if the whole world is her playground to romp in (without the background music or cityscape).  It's pure magic.  And this morning Ben & I were fortunate enough to find it not far from home at Orton Park.

Happy Birthday, Bella!

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October 22 is my fabulous niece Bella's 8th birthday and I would like to dedicate this blog to her.   

When I was a little girl, it always took me the longest to get ready.  The creative process of choosing an outfit takes time, a concept that not all understand.  Now, when I get dressed, I think of what costume I will get to wear that day.  Will I be a "fancy lady" (as Lola says) wearing sparkly things?  Will I be a fun, casual girl?  Will I be a professional?  My niece Bella and I share this trait of wanting our outfits to be just so.  The last time my mom visited, I was going through the process of choosing my costume for the day.  As I tried on yet another shirt (or pants or skirt or who knows) my mom queried why it mattered to me.  I explained to her that when I pick an outfit, it has to feel the right way or I don't wanna leave the house.  I know that Bella understands this because there was a time when she was barely able to walk and talk and she too was having difficulty leaving the house because her headband did not properly match her ensemble.  Because I had to be supportive of a fellow mom, my sister Susan, I couldn't tell Bella that I completely understood at the time.  But now it seems safe to say, I completely get that.  

When I had Ellie, back on January 26, Susan (my sister, Bella's mom) flew from warm(er) Memphis to snowy Chicago to meet Ellie for the first time.  She could not wait for the warm to arrive to meet her new niece.  At the time of Ellie's birth, we were living in a 3rd floor walk up and Susan raced up all 3 flights so as to get to Ellie faster.  Susan went with us the very first time we took Ellie to a restaurant, a Chinese place close by that seemed much louder and brighter than pre-baby.  At one point, we were eating Mexican food and Susan felt a bit nauseated.  Perhaps it was just the excitement of traveling.  When she went back to Memphis, she discovered that she was pregnant with the one and only Isabella Faith.  So, nine months after Ellie's birth, Bella was born.  (Then several years later Sophia came along and 9 months after her arrival, our Ben arrived.) 

One of the things I admire about Bella is what an absolutely exceptional host she is.  Her parents are the absolutely best hosts that I know, so she's had great role models.  On one of her birthdays, she had a huge bash with a pony and a petting zoo.  Well, we just happened to arrive the day of her party and we were rather tired.  So for most of the party we retreated to the quiet of the guest bedroom.  Imagine how incredibly special we felt when Bella spent a large portion of her birthday party not out galloping on a horse, but upstairs with us reading books. 

Every time we come to visit, Bella makes a special point to connect with Ellie, even though, it seems as if much of the time Ellie can't even see Bella.  It's as if Ellie has a blindness to all the children in the family (with the exception of babies).  Nevertheless, every single time we come to visit, Bella will attempt to converse with Ellie.  If that's not enough, Bella gives up her room so that Ellie can have a quiet, private place to retreat.  I have no doubt that the next time we visit, Bella will persevere and attempt to connect with Ellie again.   Now that is what I call true, unconditional love.

On another trip, we arrived right after Ellie had lost several of her baby teeth.  Apparently, a dentist informed Bella that if you chew food with your mouth open, your teeth will fall out.  Bella became understandbly concerned when she saw Ellie chomping away, mouth wide open, food clearly visible as she was eating.   Thus, Bella was convinced that her dental friend was correct and she tried hard to convince Ellie to save her teeth.  

 

Finally, there was the time that Thom decided he would take Bella on a "date" to the movie Night at the Museum.  The next night, I decided I would take Bella on a "date" and she graciously agreed to go to the exact same movie.  Well we were running a little bit late.  So once we sat down, Bella told me everything that had happened in the movie thus far, so that I wouldn't be lost or confused. 

Susan is forever bragging, I mean telling me, how great it is to have Bella around because Bella is always looking out for the other children in the household and she will immediately inform Susan if anything is amiss.  Bella is one of the kids that is hard NOT to like because she is just so friendly, thoughtful, kind, smart, and sociable.  She is the one in class who is always willing to help her teacher or another student.  I think if Ellie could "see" her (which maybe next time she will) she would call her, "faburiffic" (fabulous + terrific).  My life just wouldn't be as great as it is if I didn't get to be the aunt of such a wonderful niece.  Thank you, Bella for all the ways you have brightened our lives!  Happy Birthday & we love you (even when we ignore you)!

Dee Spair

So one day Dee and I were sitting around moaning in this dank, dark, stinky well with the saddest songs playing in the background.  It was awful.  We felt hopeless that we would ever escape.  Wait.  Should I back up?  Are you familiar with Dee?  Dee Spair (aka Despair) is what I like to call her that not-so-good friend who comes for unexpected visits.  When she visits, I feel as if I am walking through mud, everything seems hazy and unclear.  After Ellie's hospital stays this summer, I most certainly felt Dee's presence.  (My mom very wisely suggested I not answer the door when she comes a knockin'). 

Previous experience has shown me that after a hospital stay is often the most challenging time.  When Ellie is in the hospital, we have loads of support--friends are stopping by, family is calling, packages are being sent, the check is in the mail.   Plus, we have the entire hospital staff at our disposal, performing and keeping track of all medical interventions.  Finally, each one of our children is being cared for individually (Ben likes buttons way too much to be in a hospital room for very long). 

Then, we are sent home and suddenly our not very fun hospital vacation, along with all that additional support, comes to an abrupt end.  I am taking care of both Ben & Ellie, at a time when Ellie may not be feeling so well.  At the end of our last hospital stay, our medical interventions were much more complicated.  When we first arrived home that meant feedings or medications through her gastric tube every hour to every other hour beginning at 6am, ending at 11pm.  Overwhelmed, exhausted, burned out, plain done is how I was feeling.   

The disappointment I felt following Ellie's surgery, was staggering.  This thought reminded me of the Zen Shorts(by Jon J. Moth) story where things keeping happening in a man's life and he keeps saying, "Maybe it's good, maybe it's bad, who knows??"  For example, when our neurosurgeon came and told Thom that he had removed 50-60% of the tumor, every one said, "HIP Hip Hurrah!!"  What great news.  Then a few weeks later, her sodium was way out of wack (higher than one doctor had ever seen sodium go), she wasn't producing steroids, her hypothalamus was no longer communicating with her Pituitary Gland which meant no thyroid function either. 

For awhile, I was so angry.    Here's where we all say, "Oh that is so bad."  I kept desperately wishing we could do a do-over for our choice of surgery.  Or at the very least call the neurosurgeon and ask if they kept the brain parts that were removed and could we please please have them back, because apparently we NEED those parts!!! 

What surprises me most now is how abruptly Dee's visits can arrive.   A few weeks ago I had a meeting at the school to discuss Ellie's educational needs.  At one point, the nurse, summerized all of the major surgeries and procedures Ellie has had in her 8 years.  Suddenly I was engulfed in sadness, thinking, "Holy cow, I can't believe she's been through all of that!"  It almost felt as if these events happened to someone else's family.  But then, I remembered how after her first surgery she told me in baby signs that she was "scared".  I recalled the nurse who thought Ellie was a table and started putting all of her equipment atop of little 20-month-old Ellie, until Crazy Momma (my alter ego) came out and requested a new nurse.  I recalled the ache in my arms to hold sweet Ellie after her surgery, but not wanting to hurt her.  I recalled when I did finally hold her and how I didn't want to put her down ever.  I recalled most recently how when Ellie was intubated she awoke enough from her sedation to begin to cry.  (Which I didn't recognize at first because with a tube down your throat it sounds not at all like crying.)   Fortunately, Ellie recalls none of these experiences that cause me to feel great sorrow. 

The flip side of all of those despairing hospital stories are all the amazing stories of wonderful doctors and nurses who go above and beyond.  The joy of seeing Ellie finally feeling better. 

Recently, one of our favorite babysitters, who is a special education teacher, let me know that she had been attacked by one of her students at school.   I could tell from her e-mail that she too was at the bottom of the well, wondering how in the world she would ever get out and carry on.  I so clearly remembered feeling that way.  My hope for our babysitter and friend is that her "future self" will call her forward, letting her know, as mine did, that she will survive this and at some point she will once again thrive.  I know that when you are in the well, however, it is hard to hear any words of hope or encouragement.  The well is a frightful place and mostly silent or filled with dreary thoughts.

Because now that I've caught up with that future self,  I can see that Ellie may actually be healthier than she ever has been before.  Ellie is walking every day.  She can walk 2 and half miles, whereas before she could barely walk a block and a half.   We are giving Ellie green food through her g-tube, providing her with a lot more vitamins and minerals than she's had in a long time.  She is sleeping better than she has in many years.  Things are coming out the way we like--she is throwing up hardly ever and pooping regularly.  She is going to school, learning new things, making wonderful friends, and charming everyone there.  If it hadn't been for all of the struggles this last summer these desires for something different would not have been born and might not have lead us to this moment.  

So, I suppose, I should thank Dee for her extended stay.  She allowed me to see what I wanted to change.   Without her, I would not have been so incredibly motivated to make changes.  I want to thank my future self for peeking around the corner and passing me a bit of hope when I felt hopeless.  I am so glad to be outta that well, caught up in this magnificent moment.  That was the gift that came out of Dee's latest visit.

What I like about you...

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 I just finished reading a book by Calvin Trillin entitled, About Alice.  This book is a love letter written by Calvin to his wife who had recently passed away.  I hoped as I read this utterly beautiful book that his wife knew when she was alive how much she was loved.  I decided a while ago that if there was something I appreciated about those in my life, I wasn't going to wait until they were dead to tell them.  Now that I have written what I like best about my children, it would be remiss of me not to mention what I adore about my wonderful husband. (Plus, today is his birthday so I am contractually obligated to be nice.) 

Thom & I met at a small college in the middle of Missouri in 1999.  After we became best friends, I remember hearing a radio announcer in Kirksville (where we went to college) say, "Debbie Kennedy" as the winner of some contest.  I immediately knew that someday I too would be a "Debi Kennedy" (at the time I was a Debi Wolf).  

1.  History 

We have a history.  It is so wonderful to live with someone with whom I have a history.  My mom has been married 5 times, on the plus side it provided some wonderfully varied examples of fatherhood and marriage.  The qualities that I liked the most in those men--the love, affection, sense of humor, steadfastness--are all found in Thom. 

On the other hand, when I was growing up there was lot of moving around from family to family, and I never felt as if I truly belonged to any of them.  What I most wanted at that time, was a family, one family, that felt like my own.  Thom has helped me to realize this dream of creating a family even better than I ever could have imagined.  

2.  My best friend.

When something exciting or not so exciting happens, Thom is the first person I want to tell.  And I know because I have his children with me, he will always take my call.  Because we do have a history together, it makes it easy to jump right into a conversation, I don't have to backtrack and get him up to date.  One of the things I first appreciated about Thom was his great listening skills, because as you can probably surmise, I can talk and talk and talk...

3.  His sense of humor.

Thom is not afraid to be completely goofy.  He can see the humor in things.  I just don't think I could be with someone who didn't see how hilarious all of this is (most of the time, unless I say it is not hilarious and then it is not.)  While giving birth, Thom told me that the hardest times for him were the transition periods, when I would suddenly, become totally and completely serious.

[caption id="attachment_154" align="alignleft" width="300" caption="Ben, Thom, Ellie wait for a ferry boat."][/caption]

4.  His fatherdom. 

He is the best father that I have ever met.  I feel so fortunate that Ellie & Ben will grow up with a Dad who loves to play and laugh and enjoys spending time with them.  

When he comes home from work, he throws himself onto the floor and rolls around with Ben.  He is the Dad at the park who is running around playing with all the kids.   He says goofy things to make Ellie laugh.

He earned the title, Dr. Daddy, several years ago when Ellie was undergoing chemotherapy and he went to every single appointment with her.  (He also went to every single prenatal appointment.)  Dr. Daddy is responsible for all of the icky stuff, like changing the g-tube button every few months and giving injections.  Every morning Dr. Daddy sets out on the counter all of Ellie's many medications, labeled as to when I should give her which medication.  Then, he makes sure to get up each morning and give her her 6 am medication and gives her her 11pm dose.  As if that weren't enough, he wakes up every night whenever Ellie needs anything.  He is her go-to-guy in the middle of the night.  And, most amazingly, he typically isn't grumpy about the whole thing.  I mean I get grumpy just thinking about it. 

5.  He's handy.

Not only is Thom handy, but he actually cooks well and cleans better than I do.  Yep, he is the total package.   

6.  Secret Keeper

If you tell Thom your biggest utmost secret, he will not under any circumstances tell it.  When he puts something into the vault it is locked away for good, partially because he will forget what you have told him very quickly after you tell him.

7.  Always growing.

He's always into some newfangled thing.  I love that the two of us continue to grow and learn and expand upon this life journey. 

[caption id="attachment_147" align="alignright" width="300" caption="Baby Ben"][/caption]

8.  Courage.

Thom is one of the most courageous people I know.  When I was pregnant with Ben, we decided to have the baby at home, unassisted.  We had a lot of family members and friends and even strangers expressing concern over this choice.  Never once did Thom doubt that we could do it.  He was so excited to be a part of every aspect of Ben's birth. 

9.  Supportive

As most of you know, when Ellie was undergoing chemotherapy, Thom went about getting The Angry Monster Book published.  He knew that I was most unhappy about Ellie being put through chemo when the possibility of it actually helping were slim.  He thought seeing my book in print would give me something to look forward to when I was feeling great despair.

More recently, when my sister began suggesting that I write a blog, Thom went ahead and set up the blogsite you are reading from, so all I would have to do was start typing.  He jumps in and does these things without making me feel as if I owe him anything.

Although I could go on and on and on, I'd best not, because Thom stops reading if I go over 1000 words...

Seven years ago today

[caption id="attachment_133" align="alignleft" width="300" caption="Huggle snuggles"][/caption]

Some events for ever after change the course of life as you know it.  One of those events happened 7 years ago today (and one month after September 11, 2001).  That was the day that it felt like someone took a rock and smashed the plate glass of my life, shattering everything.  That was the day my 20-month old daughter, Ellie was diagnosed with a brain tumor.  After an emergency MRI (our very first one), the ER doctor told us that a little something had shown up and she encouraged us to go by ambulance to the University of Chicago Hospital.  I counter offered that we could go home and wash Ellie's hair (she still had EEG goop in it from our very first EEG that same morning) and go there afterwards.  (We have since discovered that hospital personnel don't typically accept counter proposals, but we were newbies to the whole scene at that point.)  Ellie & I rode in the ambulance together, she strapped to the gurney.  I told her she was a Queen and that was her chariot.  Thom raced behind us in our car.  I recall chatting up the ambulance personnel, so filled with nervous energy and anticipation was I.

[caption id="attachment_181" align="alignright" width="270" caption="Uncle Ghany, no more talking!"][/caption]

I had phoned my sister and our fabulous friend Betsy C. from the ER to let them know what was happening.  When my brother-in-law, Ghany , an anesthesiologist, heard her diagnosis, a line of explicatives emerged from his mouth that would have put Chris Rock to shame.  Meanwhile, Betsy C. jumped in her car and raced to the hospital and as destiny would have it, she met Thom in the admissions department.

When we arrived at the hospital, we were sent to the PICU and told that Ellie would need surgery in the morning, as she was on the verge of brain damage.  I was shocked.  The tumor was so big that the cerebral spinal fluid (CSF) was causing hydrocephalus (too much water on the brain).  With too much water, the electrical signals in the brain cannot be sent properly.   Both my mom and Thom's mom were on their way to Chicago to be with us the next day, this was a two-mom emergency!

The next day just happened to be Thom's birthday.  As you can imagine, we didn't feel much like celebrating.  When the doctors explained exactly what they would do to Ellie during surgery, Thom began to cry.  Even though I'd known him for 12 years at this point, it was only the second time I'd ever seen him cry, the first being when Ellie was born.

My older sister, Susan lives in Memphis.  Every time she talked with Betsy C, she wanted to make sure that I was eating.  So while Ellie was in surgery, Betsy C. took me to the cafeteria (you don't want to disobey my sister when her maternal extincts kick in).  Walking to the cafeteria was strange b/c I was so used to having Ellie beside me, talking to her, pointing things out or counting things along the way.  Then once we arrived in the cafeteria, trying to decide what to eat just felt completely and utterly beyond my abilities.

[caption id="attachment_184" align="alignleft" width="300" caption="Betsy C & Ben in Florida (1/08)"][/caption]

Betsy C.  essentially put her life on hold to help us out while Ellie was in the hospital for 2 weeks.  Anything we needed at the hospital, she would get for us.  While Ellie was in surgery, Betsy C & Thom & I marveled over the fact that this was the longest that we had ever been away from Ellie and that there had never been a time in Ellie's 20 month life that she had not been with one of us.   Betsy C. was the first one to come to the hospital the day that Ellie was born.  One day when Betsy C needed to be at work, she sent her mom to visit us in the hospital as I was having a melt down that day.

I recall dozing off in the lounge off of the PICU and then waking up to rediscover that my life had what felt like at the time turned into a nightmare.  That crashing down effect after sleeping made sleeping at the time quite unappealing to me.

After we stayed in the PICU for several days, we were given a room at a nearby Ronald McDonald House.  This allowed for one of us to go to Ronald McDonald house while the other parent stayed with Ellie.   One day as I was walking from Ronald McDonald House back to the hospital, I walked past this person who was homeless.  He looked at me with such sympathy.  Everything in my life felt inside out and upside down.

[caption id="attachment_183" align="alignright" width="270" caption="Our 8x10 Glossy"][/caption]

At one point, Betsy C. said she imagined a big committee up in heaven sitting around a conference table with 8x10 glossies.  They were discussing this rather challenging case of a little girl who would go down to earth and have a brain tumor.  They were deciding who would be selected.  Thom & I were discussed as a possibility and the committee wondered if we could handle it.  Deciding that we could, they sent this sweet angel to us.  Every since Betsy C. told me this beautiful story, I have felt honored to have been selected to be Ellie's mom.  Because the struggles and challenges seem minor in comparison to the joy and love and depth that she has brought to our lives.

I recall thinking after Ellie's surgery that I would never ever recover from it.  The whole experience left me feeling unmendable in some way.  But, here I sit today, playing office with Ellie (that's where I work on something and she works on something as if we were office mates.)  Sure, sometimes I still feel sad or despondent, but those times are much much less than the times that I feel in awe of our lives.

[caption id="attachment_135" align="alignleft" width="300" caption="Ellie filled with joy."][/caption]

I just finished reading a profound book entitled, About Alice by Calvin Trillin (2006).  Alice & Calvin (husband and wife) worked at a camp each summer for children facing serious medical challenges.  One year Alice befriended a little girl they called "L" in the book.  L was unable to grow and unable to digest food.  Alice wondered what the parents had done so that a child facing such severe health challenges could be so magnificent.  As they were playing duck duck goose, Alice decided to sneak a peak at a letter from L's parents.  In the letter, L's parents said, "If god had given us all the children in the world to choose from, L., we would only have chosen you (p 66)."  Although I don't always reach it, that is what I strive to show Ellie.  I want her to feel, that she is, as Madonna so aptly put it, our shining star.

Brain surgery revisted

Here is an e-mail I sent out the day after Ellie's most recent surgery on April 5, 2008.  I know many of you have already read this, but like I said, I may be repeating myself, like I said, I may be repeating myself.   I really just wanted a space to archive what was happening then.  If you saved any of the hospital e-mails, I would be most greatful if you could forward them back to me.  Thanks! 

[caption id="attachment_166" align="alignleft" width="300" caption="Ellie"][/caption]

Hey all you "Ellie fans"--

 

Every doctor that we see, when finished discussing something with us, asks, "Do you have any questions."  There is much pressure to ask an appropriate intelligent question at that point in the conversation (I am sure you understand this, Kirk, from previous interviewing experiences...).  Ellie decided that the questions she wanted to ask was, "Do birds burp?" 

The surgical doctor who responded really considered the question before responding that he assumed that they did b/c their digestive systems are quite similar to ours.  Now when a doctor asks if we have a question, Thom has responded that his most important question has been answered (did i spell that correctly?  it looks so funny, but everything looks and feels a bit funny today). 

 

Yesterday Ben and I were in the snack shop downstairs and Ben was riding in a hospital chair.  He had

[caption id="attachment_156" align="alignright" width="270" caption="Ben chillin"][/caption]

a bag of new trucks in his hand.  He decided he wanted to get off of the chair to look around.  He started to fall outta the chair, but did not want to stop holding the bob the builder trucks in this hand and let his face catch his fall.  When I picked him up, his face (sorry Dan, I know you won't like this part, just stop reading now) was covered in blood as he was bleeding from both his nostrils and his mouth.  Being so very good at panicking (I have learned from some of THE best panickers), I picked him up and ran over to the check out counter.  I have gotten to know the woman who works there fairly well (they sell Starbucks in the snack shop as well as donuts and falafel), she started grabbing paper towels out of its container as quickly as she could.  She asked if she could call someone (as we are in a hospital afterall!)  and immediately gave Ben some chocolate ice cream to eat.  He recovered quite remarkably after that. 

 

 After her seizure last night, Ellie was intubated (tube down the throat) to help her breathe and sedated to help her feel more comfortable with the intubation.  She is continuing to be intubated and sedated until at the earliest after her MRI.  They like to check after brain surgery to see how things are looking.  I guess it was a pretty tough night after her seizure as her temperature rose to 102 and her heartrate went to 215.  Now her temperature is back down to 99 and her heart rate is at 100 (normal for kids her age).  During surgery it was discovered that her shunt was completely blocked and now she has an external shunt.  The plan is to replace the shunt some time next week.  When she had the seizure last night, it looks like she may have developed a bit of pneumonia which is also now being treated.    So right now she is pretty much out with the doctors arrousing her every few hours to check her neurological responses.  Intubation will insure that she continues to receive enough oxegyn.

 

[caption id="attachment_168" align="alignleft" width="300" caption="Kip & Patrick visit (8/05)"][/caption]

Two of Ben's fabulous uncles (he has quite a few of those!), are in town to show him a good time.  I wanted Ben to be away from the hospital as much as possible, particularly immediately after surgery.  I think it might be a bit startling for him to see Ellie right now intubated arnd all tubed up.  Additionally, I want to keep the room quiet for Ellie as much as possible.  Right now, Kip and Patrick are at the zoo park, where Ben was planning for Kip to go down the slide and Patrick to ride on the swing, although I could have his plans reversed.  I told Kip he could take Ben to a nearby coffee shop with a t-r-a-i-n table.  Spelling didn't help b/c  Ben immediately said, "I want to go to the train table coffee shop."  I think he is going to have the most wonderful weekend ever and I think he will be asking to go to NYC as soon as possible. 

 

That is about it for now.  Thank you all for your well wishes!  Love, Ellie's biggest fan

Lazy Jane's

[caption id="attachment_109" align="alignleft" width="300" caption="Uncle Kippy and Ben snuggle"][/caption]

My brother Kip lives in Brooklyn, New York.  He is a major world traveler, visiting us several times a year.  On one such visit, he suggested we try a nearby restaurant.  The outside of the restaurant looked like a big purple and green house.  I love someone else cooking me food, particularly a restaurant, so I was a willing participant in this experiment. 

When we went inside there were yummy croissants (Ben's favorite) and scones plus waffles or sausages (Ellie's favorite) or eggs.  Then, upstairs is a play area with sofas, chairs,  coffee tables and toys.  Ideal for eating with children and not having to coerce the kiddos into staying seated at the table.  Very relaxed and comfortable and wonderful.  So extremely glad that Kip suggested it.  I am sure that if you have visited us since Kip's fabulous suggestion, you too have experienced the wonder of Lazy Jane's.   Let's all take a moment now and silently thank Kip for his contribution to our lives...

When Ellie was undergoing chemotherapy, every week before her appointment, we would stop by Lazy Jane's to 'sweeten' the deal.  It made it so much more bearable to stop by and get something yummy before heading to the hospital for a big poke and laying down time (I think chemo took an hour or two each time, but I'm blocking that out now...)

Now we go to Lazy Jane's because it is another establishment that can handle our crazy moments.  On one recent visit, Ben was starting to have a major melt down.  Which then led to Ellie starting to melt down.  Which lead to me thinking about when I could finish the yummy croissant and tea that I had ordered.  The woman who had checked us out came upstairs and talked with Ellie, while I went over to discuss options with Ben.  Then, Karly, the restaurant manager came upstairs with a cup filled with animal crackers for Ben. 

After distributing the goodies to Ben, Karly went over and bent down to talk to Ellie.  Ellie told her, "I'm sorry I got so crazy."  And Karly looked Ellie right in the eyes and said, "It doesn't matter to me how you feel, I am just always so happy to see YOU."  It was one of the most loving things that anyone has ever said.  Karly was able to see past Ellie's crazy moment and continue to love her. 

Now every time we go to Lazy Jane's (which is often), Karly knows that if there are no chocolate croissants Ben is going to be highly upset.  When she sees us coming, if the chocolate ones are gone, she races behind the counter and starts making a special yummy chocolate filled plain croissant.  It is fabulous.  Knowing that there is a restaurant close by where we can go and feel totally comfortable and free to be ourselves and eat yummy food, it is the best feeling.  THEN to top it off, knowing that this establishment is within walking distance from our house makes us never ever want to move.  Thanks, Lazy Jane's for bringing so much joy to all of us so many times!  (And thanks again to Kippy for the idea.)

Walking across Wisconsin (one mile at a time...)

 

[caption id="attachment_79" align="alignright" width="300" caption="Smiley girl"][/caption]

(I know some of you may have already read part of this blog from an e-mail I sent a couple of weeks ago.  I wanted to include it anyway for those of you who are just now joining us.  Plus, I figure I tend to repeat myself in real life, why should my blog be any different?  The bonus of reading a blog is that you can always skip it, I'll never know the difference.  Whereas if I'm talking to you and repeating myself, if you leave, I'll probably notice.)

This summer, we formed Team Sunny Days in honor of Ellie's wish to Sesame Street in 2006.  The first Make-A-Wish walk was in Milwaukee.  It was a warm, muggy August day, rain was definitely in the air.   The location for the walk was absolutely breathtaking, along a path bordering Lake Michigan.  We got a slow start as Ellie wanted to talk to all of the volunteers along the way and give them her special double cross hand snuggle (aka the infamous "doucrancruggle"). 

As we walked, Ellie was getting a bit tired.  Her feet were beginning to hurt.  Ellie decided to switch to her new "swim walk" (aka "the swalk") which means she uses her arms as if she is swimming and walks at a faster pace.  Suddenly it started to rain, and Ellie became confused because you are most definitely NOT supposed to get wet on a swim walk, that is part of the point, that you can swim without the hassle of getting wet.  She sort of spluttered as if she were thinking how appaling it was of the sky to throw water at her in this way, particularly when she was working so hard to stay dry.

 

Ellie was given a special yellow t-shirt that said "Wish Kid" on the back, so that every volunteer and participant who saw her knew that she had had a wish granted.  Many of them would start yelling and cheering when they saw Ellie, encouraging her on. 

 

At one point, a man joined us as we walked.  He had written in the name of his daughter and the years that she had been alive on the front of his t-shirt.  He told us that he always walked with the participants who were at the end of the line because when his daughter was alive, they were always the last ones.  He told us how his daughter, a teenager at the time, had chosen as her wish to travel to some Islands in the Caribbean and go shopping (my kind of wish!!)  I was so inspired by this man's ability to not only carry on, but to walk in honor of his daughter.  And to walk so that other children could have the opportunity to have their wishes come true. 

 

Manitowac Make-A-Wish Walk (October 4, 2008)

[caption id="attachment_86" align="alignleft" width="300" caption="Walkin the Walk"][/caption]

Ellie decided that we could only take Wish walks in cities that had a "walk" in their names.  Get it?  MilWALKee and ManitaWALK. 

Saturday (October 4) was an absolutely perfect day for a walk.  Bright fall blue skies, fall foliage just begining to bloom, and once again right beside Lake Michigan, but this time we were at a crisp 52 degrees. 

Ellie had a hard start, she was feeling tired and her feet were hurting.  We decided to do the 1 mile fun walk, rather than attempt the 5K.  Ellie sat down on a bench for about 2 second rest and then decided to carry on with the walk. 

The walk in Milwaukee had been huge, probably close to a thousand people.  It was extremely organized, lots of volunteers, a stage, even Barney was there.  The one in Manitowac had maybe 60 people there. 

One team wore t-shirts in honor of a boy who had a wish and was no longer around to do the walk.  Whenever I see those t-shirts, I feel like I have no reason to complain about anything.  Ellie is with us now, spreading her joy as much as she possibly can.  But seeing t-shirts in memory of wish kids makes me quesion myself.  Am I truly appreciating my kids?  Am I being as kind as I would like?  Am I present for the life we have created together (or am I too focused on all of the doingness of motherhood)?  How can I be the mom I strive to be more of the time so that I am appreciating these two precious gifts I've been given?   

I had fancied up Ellie's Wish Kid t-shirt with sparkles, beads, green lace, and fringe.  Maybe 25 of the participants at the walk were young beauty pageant winners.  One was even Miss Teenage Wisconsin. (She high "twentied" Ellie during the walk.  Ellie doesn't think a high five is enough, she does all hands at once calling it a high twenty.)  After the walk, one of the beauty pageant winners very calmly and quietly came up to Ellie took off her crown so that Ellie could feel it because she could see how much Ellie liked sparkly, glamorous things.  It was much heavier than you would have expected (not like the ones I've tried on at Discount Party Warehouse, those are surprisingly light).  Well when the other pageant winners saw that one of their own was talking to Ellie, there was suddenly a swarm of pageant girls around Ellie and then just as suddenly some of the moms were taking lots and lots of pictures, while Ellie stood there covering her face and yelling (I'd really like to see how those photos turned out!)  I told Ellie afterwards that she was like a celebrity at the Wish Walk and that oftentimes celebrities do not want there photo taken, but guess what happens?  You got it, they get there photo taken. 

[caption id="attachment_77" align="alignright" width="300" caption="Yummy!"][/caption]

Thom said that the part he felt most emotional about was when we went to the donation table and he said, "Here's Ellie, she raised $2100!"  (Of course we couldn't have done it without all of your help!!!)  The person sitting behind the desk hadn't realized we had raised so much money and was simply astonished.  At the ceremony beforehand, she talked about how they have 14 wishes in progress right now in that area of Wisconsin, so any money we raised is actually already being used.  She is going to e-mail us the information on the wish that we will be co-sponsoring.  I feel so filled with excitement that very soon another child will be looking forward to and experiencing the magic of a wish, partially because of all of us!  Go team Sunny Days!