these girls

We go way, way back.  Back to the age of tight rolled jeans and Bel Biv Devoe.  Tape decks and big bangs.  Passing notes and first boyfriends.  And from our Friday nights at Roxy Wheels to our sacred kid-free girls nights out, we've lived, loved and laughed.  Weddings and funerals.  Baby showers and birthday parties. And everything in between.  

When we first got our diagnosis these girls took time from their own busy lives to come babysit, meet me for lunches and listen while I tried to make sense of my new reality.  And they haven't stopped there.  They have now joined forces with Revolution Brewery and put together an over the top fundraiser to help support Emmy's everyday battle with Rett Syndrome and the International Rett Syndrome Foundation.  The invite has it all...

http://www.gofundme.com/89r3yg 

The words thank you just don't seem like enough.  I don't really know if I have the words to convey how important your friendship has been over the years.  Cue the Golden Girls theme song, that should take care of it. 

You're all lucky I don't have access to middle school pictures since they're at my parent's house.  I'm sure there are modeling pictures, bad perms, braces, the works.  Here's the oldest I could find.  18, naive and living it up...

  

So here's a BIG, FAT CHEERS to Kate Ipsen, Kelly (Schwarz) Wallin, Jillian (Jarzombek) Shadob, Arian (Turner) Bichsel, Annie (Davis) Leppin and our beautiful friend Jackie who was taken from us way too soon.  Her smile, laugh and unwavering friendship will never be forgotten.

Love you girls.

    

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

 

 

 

  

 

 

 

 

 

 

 

 

 

 

 

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... 



   

5

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)



 

 

...by 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.

 

 



Pop Goes the Weasel

This morning I was putting dishes away in the kitchen when I heard a little song I hadn't heard in years.  Pop Goes the Weasel was very slowly playing in the family room and it brought me to tears.  We have a jack-in-the-box that plays this song when you turn the handle.  In the days when I was holding onto the idea that Emmy was going to be fine, I would watch her use her hands to turn the crank on the side of this toy.  Her hands worked so well.  She would turn it over and over with such purpose.  She loved seeing the monkey pop up at the end and she loved the song.

I walked into the family room to see Emmy staring at Olivia playing with this toy and you know what...it really pissed me off.  I know anger is a stage in the grieving process.  This grieving process that I experience over and over and over again to varying degrees.  I don't know when it will hit or what will make me feel despair but it never seems to completely go away.  I prayed and prayed and prayed.  I know pleading with God is another stage in the grieving process.  As I watched her body fail her, my prayers turned from pleading to all out begging.  And finally, they've changed to prayers for peace and happiness and strength for her to endure what she must day in and day out.  People suffer.  All over the world.  In many different circumstances.  I know this is part of life.  But I can't help but feel there is something unique to Emmy's, and all Rett girls' suffering.  The only time they experience relief from the constant  movement, hand wringing, inability to breathe, shakiness, frustration in not being able to communicate and the other lovely things they experience daily, is when they're sleeping, and sometimes not even then.  And this goes on.  As a parent, you can become slightly numb to this because you must continue to care for them the best you can, but wow.  Really?  It's exhausting just watching her little body in action.  I can not even begin to imagine what it's like to experience it every waking moment of every day.   

So many, including myself, talk about all we've learned from Emmy.  How her presence in this world has changed many for the better.  But the question I'm left with, as her mother, is "What about her?"  It's great WE are enlightened but WHAT ABOUT HER?  In school, when they talk about 'community helpers', what is going through her mind?  Is she thinking, yes, one day I'd like to be a teacher too?  We've been trained to think that the only people useful in society are those who are able to put on their work hats and contribute to the whole.  Those who pull themselves up by their boot straps and make something of themselves.  It is this, the capitalistic society we live in that has the tendency to forget about those who have the most important jobs.  The job of changing the human spirit.

Never in my life have I felt God's presence like I do now and yet we haven't been to church in a while.  We took the girls to Catholic mass every Sunday.  People gave warm smiles to the sweet little girls sitting nicely with their parents.  Once Emmy started regressing, those warm smiles turned to cold hard stares.  It was as if they had cartoon bubbles over their heads.  Their thoughts were very transparent.  It's these times when I wish I could hand them a purple card and walk away but you know what...you need two hands to dig through your purse to get the purple cards out.  You also need two hands to hold your flailing child so she doesn't hurt herself or anybody around her.  The fits have gotten so much better now that she's on the beta blockers so maybe one day we will have the courage to try again.  One day.      

I've done enough praying, reading and contemplating to know that I don't know.  Nobody on Earth that I turn to for an answer will be able to give me one.  What I do know is that it is in your faith that you will find comfort.     

  

Purple Cards

 

 

There have been many times in the last two years that I've wished I didn't have to explain the horrifics of Rett Syndrome in front of Emmy.  I try and watch what I say in front of her but it is kind of hard to explain in a sunshiney way.  Let's face it.  It's not a sunshiney disease.  Thankfully,

Girl Power 2 Cure  came up with an answer.  This organization creates 'Purple Cards' families can hand out to give people info without having to launch into a big explanation.  I started her bio page, sent a picture and changed up the wording on the card a bit, and they sent me these beautiful cards...