Introducing our newest member...

 Big brother Ben, proud poppa, Lotta.On Sunday, August 15th at 4:20 am, we welcomed Charlotte Joy (aka Lotta) into our family.  Here are some photos for your enjoyment.Ben has a lotta love for the baby. Sometimes he calls her Angela, but he is still not completely convinced she is a girl.

Ben loves to help out by holding his sista.

Consider yourself updated...

[caption id="attachment_2801" align="alignright" width="263" caption="Again Ellie looks so wise in so many of her newborn photos."][/caption]

OK so baby Sunshine did not agree with me that 8-9-10 would in fact be the perfect birthdate.  Every day now Ben gets super excited, "Maybe today will be the day OR maybe next week." 

My friend, Jen, (from Zumba not to be confused with Dr. Jen, Jenny, Jennifer or Jennifer) requested that I blog an update on Ellie.  Ellie continues to do better and better.  Her neurologist suggested we try Ritalin as a stimulant.  If you do not have ADHD, then it acts as a stimulant.  As you know, every time we start decreasing her steroids, Ellie becomes more sleepy and starts leaning when she sits/stands/walks.  Last week this was beginning to happen once again.  We started her on Ritalin and she was suddenly more awake and not leaning at all.  Amazing.  Her physical therapist said they had the best session ever--Ellie was stronger, not leaning, and even more cooperative and focused. 

Yesterday we went to the hospital for a blood draw and to clean Ellie's port.  Ellie still has her port (an access point for blood draws and IVs)  in from when she was doing chemotherapy.  It is a surgical procedure to remove the port and we wanted Ellie to be stronger before putting her through yet another surgical procedure.  So once a month, we have to get the port cleaned by our oncology nurse, Peter.  Peter is so fabulous.  He loves to laugh and thoroughly enjoys Ellie's words and stories.  As we were getting ready to depart, we ran into Dr. Puccetti (oncologist) and Kristin, her nurse practitioner AND Dr. Iskandar (neurosurgeon extraordinaire) and his nurse practitioner, Jane.  Dr. Iskandar immediately asked how Ellie was doing on the Ritalin.  I was amazed that just off the top of his head he would recall that was our most recent course of action.  Then he asked Ellie what her little sister's name was going to be, because he recalled that Ellie wants a sister AND that we STILL don't have a boy's name chosen.  I mean the man is a freakin' brain surgeon.  How does he keep all of these extraneous details in his brain along with all the mechanics of the brain and brain surgery.  I was totally touched that he recalled.  I could not imagine the people we worked with in Chicago even being able to recall Ellie's name, not to mention all of the details of her.   When we returned home, I called Thom to tell him, once again what a fantabulous medical team we have here!!

My dream

[caption id="attachment_2796" align="alignleft" width="300" caption="Ben as a newborn."][/caption]

About a year and a half ago, I suddenly, inexplicably, knew that there was another, as yet unseen, member of our family.  For several months I struggled against this wanting.  It felt like I already had my hands full.  The funny thing was I believed this so hard that one day a neighborhood woman stopped to tell me I needed to stop having babies.  Funny.  There were numerous logical reasons NOT to have another child.  Yet, I would look around our house, be on a walk, and suddenly envision this new baby with us.  Unfortunately, there was an empty baby-spaced spot that could not be filled otherwise. Already a part of our family.  He/she was a force not likely to be stopped. 

In the book, Lift(Kelly Corrigan, 2010), the author/mother tells her daughters that "This was my dream.  You were my dream (p 77)."  That so perfectly describes how I feel about my family.  All those years growing up, going from one family to the next as my mom remarried, I longed for the family that I have now.  I recall seeing a magazine picture where a mother was in the bathtub with 3 or 4 kiddos and I longed to be that mother.  I know there is a lot of talk about how children feel misplaced when another child joins the family.  As if that particular child was not enough.  It is compared to a husband taking another wife.  I tell my children that the reason I want to have another baby is because I have had so much fun with them that I wanted to do it all over again.  I was ready to jump back on that roller coaster ride for all its twists and turns.   This baby, just like Ben, gave us something to look forward to in a year filled with surgeries, chemotherapy, hospital stays.  I know that at some point, I will look back on this year in wonder and awe at how we all not only survived but thrived in the midst of all THAT.  And I will know that somehow this year has helped to shape who we have become.  Pushed us to evolve and adapt to that which we thought we could not. 

[caption id="attachment_2797" align="alignright" width="300" caption="Ellie right after birth, looking wise already."][/caption]

Today I am full term (37 weeks).  The baby could come any time, of course there is a 5 week time span of when this could occur.  (I am shooting for 8-9-10 because I think that would be such a cool birthdate to have. Thom likes the idea of the 28th, because Ellie is on the 26th (of Jan) and Ben is the 27th (of March.)  Now my dream of holding this baby, walking him/her around the neighborhood is even closer than ever.  How fortunate this baby will be to have a dad like Thom, who will laugh, play, enjoy, listen.  The baby will learn how to be relaxed and confident from him.  And how to emit loud bodily noises.  Ben is already planning on teaching this baby absolutely everything.  He calls the baby "Sunshine" because that could be a boy or girl name (although I think T-Rex was his absolute first choice for a baby name.)  The baby will learn so much about appreciation and unbridled enthusiasm from Ben.  The baby will be taught Ellie's creative words and her gentleness.  And how to jed (joy spread) and love unconditionally from her.  Although Ellie has not been a big fan of babies as of late, she will still, unexpectedly tell me how excited she is for our new baby to arrive.  I do not know how I was so very fortunate to have my biggest dream come true,  but I did.

Day camp!!

[caption id="attachment_2785" align="alignleft" width="300" caption="Huggable kissable Ben"][/caption]

Ben started day camp last week at the YMCA (soon to be renamed "Y", which will be hard for me not to think in my head in a dramatic voice, "WHY???")  The first day Ben was a bit nervous and excited.  We talked about how it's funny that you can feel BOTH nervous AND excited at the same time, particularly about something new.  He did great with drop off on the first day.  Then about 15 minutes before I was to pick him up, he started missing us and everything seemed sad sad sad.  One of the teachers told me he was pretty much inconsolable for those last 15.  When we left, Ben explained that he had not enjoyed the snack (gluten free graham crackers aka cardboard) and that he was hungry, tired, and hot.  I actually appreciated that he came up with these reasons for his upset because he wasn't blaming the day camp for being "bad", which made it easier to go back to the next day. 

The second day when I came to pick him up, Ben was looking for us out the window.  On most sunny days (besides the first one) the children get to go to Jack Splash at the end of class.   Jack Splash is an outdoor watery wonderland with lots of toys and water spraying in every direction. 

By the third day at pick up, Ben was playing hard in Jack Splash not at all looking for me.  As we were leaving, he started giving huge hugs to his classmates.  It was as if every single day was a bit easier, a bit better than the last. 

[caption id="attachment_2786" align="alignright" width="300" caption="He has gotta lotta love."][/caption]

Last Tuesday, Ms. Zwart and Ms. Mack came over while I took Ben to day camp and then went to the grocery store.   I felt so weird being at the grocery store by myself.  Now there are times that I feel like I really truly need to be alone wherever that may be--in the car, at the grocery store,  on a walk.  But when I walked into the BIG Hy-Vee, I felt like sobbing.  And a voice in my head shouted, "There is NO crying in Hy-vee!"  Ben and I share an enthusiasm for shopping currently.  If I say, "Hey Ben should we try these crazy straws?"  He'll agree enthusiastically that yes we should.  (Thom is hopeful that Ben and I not shopping together will translate into less of a grocery bill.)  I suppose it just feels as if this really special time Ben & I have had over the last 2 years (while Ellie was in school) is coming to an end.  Not that I won't see him, he's not afterall, getting his own apartment.  Watching him change and grow and develop is such a different experience than watching Ellie and her constancy.  Sometimes I wonder which one makes me more sad, the constant change of Ben or the constant sameness of Ellie.  Very soon Ben will have this whole other life away from the rest of us.  It's weird suddenly not knowing all the intimate details of his day, but instead only what he chooses to share. Right now when I drop him off, he gives me lots of hugs and kisses and will inquire whether or not I think that will "fill him up" until my return.  He has even shouted across the preschool room, "I LOVE YOU!!!" as I leave.  I know that all that demonstrative, enthusiastic love will soon diminish.  I am trying to just soak it in and enjoy it while it lasts.   I feel this whole other world opening up to him, for which I am so excited about his involvement.  At the same time, I miss our special days together, just the two of us.  His sudden, fierce hugs and kisses.  His unbridled enthusiasm.  This letting go in parenting is such a constant, at times (like at the end of pregnancy) it breaks my heart.  At other times it feels me with pride and wonder.   

This fall, most likely, both my children will be riding the bus to school.  Which will be terribly convenient for me with a newborn.  Ben and Ellie will be attending different elementary schools (Ben's is K-2nd grade, while Ellie's is 3rd-5th).  I just keep thinking of the last time Ben and I walked Ellie home from school.  I didn't realize that was going to be our last time walking home from school together.  I keep wondering did I appreciate our time together enough?  Was I grumpy that day?  Did I holler and yell?  It seems like the last time should be more memorable.   

Update on Ellie:  We have started lowering her dose of steroids, once again.  Ellie's face has become quite large due to the increased steroid usage.  And once again, she has started becoming more sleepy and more leany or "tippigable" as she likes to say.  (Although strangely this time her leaning is to the right instead of the left.  Go figure.)  Her physical therapist commented that while she is more tired and less straight, she has fortunately, not lost her strength.  It does seem somewhat like a step back however in her recovery.

Road Tripping (from back in january)

My fabulous brother Kip and his wonderful partner Patrick Kyle invited us to stay in a hotel with them in St. Louis during the holidays.  At first we were reluctant, wondering if Ellie would be up for such an undertaking.  Then one evening it just hit me that Ellie would never ever refuse a trip to see someone she loved regardless of how tired she felt upon arrival.  We found a hotel in St. Louis meeting our requirements--a 2-room suite, indoor swimming pool, and restaurant on site.  We decided to travel down the day before our time with the uncles so that we would be relaxed and ready for fun upon their arrival. 

We drove to St. Louis and checked in on Tuesday.  When we checked in on Tuesday, we were upgraded to a floor that gave us access to free breakfast in a lounge area that had snacks and sodas on hand at all times.  We felt pretty spiffy.  On Wednesday, Thom & Ben went to the Science Museum to see a special Dinosaur exhibit.  Fortunately for us, Thom's younger brother, Dan and his lovely family were in St. Louis for a convention, so we were able to meet up with them while in town.  One of the things I recall most is how my nephew, Noah explained that when his mom got older he would hold her as she has held him since he was a baby.  I mean it was one of the sweetest things, that he was already planning on sharing the love he has felt from his wonderful mother, Sara.  Then, my niece, Noah's younger sister, Mia, chimed in, wondering if he'd have to hold up their mother because she was dead.  It was so unexpected after such a loving statement, I could not stop laughing about it for the rest of the day. 

While at the hotel, Kip and Patrick were playing hide-n-seek with Ben in the hotel room.  Kip would really stretch the game out, "I wonder if Ben is hiding behind this picture? Maybe he's inside the fridge?"  Well when Patrick started playing, he immediately found Ben, to which Ben responded by bursting into tears.  Kip told Patrick quite huffily, "You aren't supposed to FIND him!"  At around the same time, Ellie was showing her uncles how to do the attitalk (attitude walk--hands on hips, never to be done on the stairs).  Ellie got up to show them her attitalk and her bummy was totally hanging out of her pants and undies.  Kip and Patrick could not stop laughing, to which Ben assumed was in response to something he had done.  So then Ben started trying to retrace his previous actions to figure out what was so darn amusing. 

After staying in St. Louis, we decided to go for broke and travel on to Memphis, another 5 hour drive.  My children are just the perfect age for car trips right now.  All we need is our personal DVD player for Ben and a box of DVDs and a box of crayons for Ellie to peel.  I barely recall the children asking when we would be at our destination because it just so rarely happened.  In Memphis, Ben really discovered his love of playing with his cousins.  The 2nd morning he decided he would sit on the stairs awaiting the other children's awakening.  What he most loved to do was to just run around the house over and over and over.  If the other children were not running around, he would say, "Hey let's go chase!" 

When we arrived in Memphis, I had my hair styled in two braids.  A few minutes after our arrival, my niece, Bella, came back into the room sporting the same hair style.  I felt honored that she trusted my hair judgement enough to want to simulate it.  Bella is quite the fashionista, so it was high praise indeed. 

At one point he gave his 2-year-old cousin a dinosaur, one he felt he had outgrown.  To which his cousin exclaimed, "Wow!  You got me a present??"  To which Ben responded with, "Yeah, I didn't really like that one." 

The weird thing was the more we traveled, the more our car became smaller and smaller.  At one point a similarly sized car passed us with only one passenger on board.  It looked so spacious in his car with a pillow in the passenger seat and clothes hanging in the back window.  I thought, "Look at all that ROOM!!!"  Before heading back to Madison, we stopped and spent the night at Nancy and Gene's (aka Grandma and Grandpa, Thom's parents). 

As I suspected before this trip, I have never ever regretted making the trek.  Even though Ellie was extremely fatigued.  It was well worth it to create so many memories with this fabulous family whom we adore.  Since then, Ben has often wondered when he would get to see his cousins again.  Would he have to be an adult for that to happen?  I know that we will find a way to be together again soon because it is just too much fun when we are all together. 

(If anyone has any photos of this great adventure, would love to include them in this blog....)