Wednesday, September 18, 2013

A Little More Summer

We spent a lot of time at pools, splash pads and parks...


Emmy's preschool teacher invited us to her pool for the afternoon.  It was so much fun!  Emmy floated around with her favorite teacher, I chased Olivia and Ava brought a friend.  We had snacks by the pool (thanks to Margie who brought Starbursts and Goldfish for the 'salty/sweet' experience : )  We absolutely love our Kindergarten team but miss our preschool crew!   
We did a little of this...
And a little of that...

We spent some days in the city...

And spent the weekend celebrating our 10 year anniversary.  Thank you to the moon and back Mimi and Grandpa!!



Here's to a happy Emmy and many more summers like that of 2013!

Summer present

Although I had absolutely no time to devote to blogging this summer, I did take pictures.  The summer of 2013 has come and gone.   I can honestly say it was pretty wonderful.  Yes, it was a lot of work.  And yes, it took some planning.

But Emmy was happy. 
Olivia became mobile. 
And Ava was my partner in crime.     

Olivia began walking in June!  One morning she decided to start standing up in the middle of the room and attempting a couple of steps.  We cheered and screamed.  And maybe I cried a little.

 One of her favorite pastimes
Ava rocked swimming lessons!  Here she is, no floaties, no fear.

John loves camping.  The furthest he gets into the wilderness these days is our city lot back yard ; )
We spent time with Grandparents, Aunts, Uncles and Cousins...



Lots and lots of cousins!!



I couldn't resist adding this picture of our cousin Joey.  This girl cracks me up!

One of the highlights of Summer 2013:  Meeting Laurie Berkner!
  Thanks to Megan Lowe, we were able to meet Laurie before a show in Lake Geneva!!  Emmy loved absolutely every second of seeing her pals and dancing it up at the concert.
And Laurie was so gracious.  She sat down on the couch and we started piling girls on top of her.  She didn't even look like she broke a sweat! 
Our Rett brigade from left to right: Zoe, Emmy, Lily, Norah, Cammy, Laurel and Keira











Tuesday, September 17, 2013

Summers Past

Every summer since Emmy started showing delays had felt like an eternity.

The summer of 2010 I spent every single day trying to get her walking.  Every time we played, I incorporated therapy in some form.  Every trip to the pool, library or park I made sure she was moving.  I remember feeling guilty going to a museum because I knew she would be in the stroller all day...not moving.  Even though I did a pretty good job of pushing the thought aside, I still worried constantly about her and her physical ability.  But, she worked incredibly hard and we were relentless.  She finally walked at 26 months in October of 2010.

In April of 2011, we first heard the words Rett Syndrome.  In May I miscarried.  That following summer, as she regressed, I think I cried every single day.  I didn't have any respite in place because I didn't know how bad things were going to get.  The only breaks I had were when John was home and when she had her hour long therapy sessions three times a week.  Being there everyday, watching her slip away, was heart wrenching.  We were constantly on the go because Emmy was the most unhappy when she was home.  I had it timed to half hour periods.  After a half hour of being home (and never in the family room, always back in the kitchen area playing music) we had to change the scene.  It was an insane pace but she just couldn't be around her books and toys.  It made her too angry.  I think just being in the family room where she used to play would set her off.  I was a complete maniac.   

By the summer of 2012 Emmy had pretty much finished regressing but was still having her fits.  She was just trying to get used to the limitations of her new body. Olivia was pretty tiny so we spent a lot of our time at home.  Emmy went to a summer camp and had extended school year which helped keep her active along with her private therapy sessions.  It was excessively hot that summer so we weren't able to get out a lot.  The pool was pretty much out of the question unless I had someone there to help.  And even when we got to the pool, Emmy would break down and somebody would have to leave to take her home.  I was so grateful when school began again and we had our beloved Mrs. McCarthy, Mrs. Winters and Mrs. McMahon back!!

As I reread this, I guess it sounds pretty doom and gloom.  There were rosey times too of course but this just happened to be a really challenging season of life.  I am glad I'm writing it down.  It makes me realize how much better things are now.  Other Rett families told me it would get better but honestly, I didn't believe them.  She has matured and accepted, as we all have.  She is strong and wise and amazing and so much more. 

And that brings me to summer of 2013... 


Friday, September 6, 2013


On August 21st Miss Emelia turned 5 and it goes down in the books as the best birthday yet!  Ava had her first friend party when she turned 5 so we decided that Emmy should follow suit.  She agreed a pool party would be perfect so we got busy planning.  She helped with all the details and was truly all smiles whenever we talked about party day.  Girl was pumped!

The whole day could not have been any more wonderful.  I mean, how can it go wrong when you've got the absolute best preschool pals, a pool, slide, fountains and a huge sandbox?  Not to mention pizza, chocolate chip cookies and ice cream.

It just so happened that Emmy had a very slight fever the day of her party.  She was acting totally fine so we decided to go ahead with the plan.  I know this is very strange but when Emmy isn't feeling 100%, her Rett symptoms lessen.  She breathes better and has much better control over her body.  We know there is a connection between the immune system and Rett and we know other parents have reported the same thing.  As a result of better body control she was able to do this... (pay no attention to the annoying, overly excited mom voice in the background) far my favorite moment of the day.  I love that she's digging. with her friends. completely unassisted.  I feel like I got a glimpse of what her life could be like if she had just a smidge more control.