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...

 

 



 

 

 

 





A Lesson in Love

I was at my sister's house watching her twins one afternoon.  Emmy's cousin Ryan told me he'd like to feed her her mac n cheese for lunch.  This video melts my heart.  I had dreams of these two growing up along side each other.  I had dreams of them running, pretending and eating popsicles outside in the summer.  This certain scenario never entered my mind.  Although this is not exactly what I had imagined, I am thankful Emmy has cousins that want to be her helper.  It is such a simple act of love but it makes my heart swell with gratitude.  It is hard to hear, but at the end of the video Emmy's other cousin Kaitlin says, "This is the best day ever." And Ryan responses is, "Yeah".

The Madness Continues

I was on the phone with my parents one day, talking about what I was going to do with all three girls when the big girls were out of school the week of Spring Break.  Keeping Emmy active when we don't have a lot planned can become a challenge.  Especially since all Olivia wants to do is hold my hands and walk.  So we cooked up a plan.  We were going to face the crowds and head to Disney.  Some may say we're crazy, including my husband, but it ended up being such an awesome, memorable trip.  I am grateful we had a week, a whole week, together.  Away from our house, away from the dreary Chicago 'spring', away from doctors appointments, therapy and our usual schedule.  It was a much needed break and I thank my parents a million times over for getting me the $&^* out of town!

For some reason, unknown to us all, the computer decided to bump us up to first class on the way to Orlando.  I've never been in first class before but was sure all the other passengers were going to be thrilled when we barreled on there with three kids.  We came prepared.  Binkys, bottles, gum, music, headphones, changes of clothes, our purple cards explaining Rett Syndrome, etc.  The girls did amazingly well, especially since we were rerouted to Tampa because there were tornados in Orlando.  I'm surprised my father's hand is still in tact.  As we bumped through some bad turbulance I was cutting off circulation and telling him I was getting off this plane in Tampa.  I was determined to get a rental car and drive to Orlando.  Meanwhile, Emmy was smiling ear to ear, laughing and enjoying the bumpy ride.  Once on the ground in Tampa the pilots were awesome enough to invite the kids into the cockpit...

I was slightly nervous Emmy was going to start hitting one of the millions of buttons and set off some alarm.

We ended up staying on the plane, waiting for the weather to clear and getting to Orlando.  Our rental car wasn't quite big enough for all of us and our luggage.  We thought about making two trips but it was decided we were going to make it work.  This is was the view from the front seat.  I was not unscathed, I was trapped under a suitcase too.

After getting lost a couple of times, we arrived at our little condo.  When we got out, we all just stood there and appreciated the warmth.  Just to be outside, in short sleeves with no snow was exciting enough.  The next week was full to the brim with parks, pools, walks, sunshine, lots of laughs and a couple of tears.

One of the best parts of the trip was putting Emmy on my shoulders so she could see the parade.  She was kind of bopping along up there, watching, but when Cinderella came she started to get giddy.  She was laughing and wiggling around.  It felt like such a normal four year old moment.  She wasn't happy because she was listening to music or being distracted in some other way.  She was happy because Cinderella is her favorite.  It's one of the very few videos she will sit still and watch.  So I was just able to soak it in, all her happiness, and forget about Rett for a minute.

 

 

 

March Madness

John, Ava and Olivia's birthdays (and Ancho's unofficial, made up birthday), a trip to Florida, Easter and D day...so much packed into one month.  Although madness sums it up, I wouldn't have changed a second.

The month started with what I will call 'birthday therapy'.  Not long before Emmy's third birthday we received our official diagnosis.  I was determined to celebrate her third birthday with a big, fat smile on my face.  Well, that's not exactly what happened.  I had my brother and sister's families here, decorations up, cake ready and I put on a good show for a while.  But by the end of it I was in my room crying.  Watching all the kids enjoy the party while Emmy was so withdrawn and unhappy (this was mid regression) did me in.  Since then, birthdays have been a little tough, even Ava's.  On Emmy's fourth birthday I spent the day fighting with the bus company trying to get a shorter route or an air conditioned bus since she recently began throwing up and becoming altogether unregulated in the heat.  After spending the first half of the day on the phone (school was starting the next day and I needed to get it settled) we opted to hop in the car and head to Lake Geneva.  It turned out to be a beautiful day, we all had fun but I still couldn't quite shake the sadness.  Enter 'birthday therapy'.  As I began thinking about Olivia's 1st and Ava's 7th birthdays, I found myself getting all pinteresty.  This is rare.  But as the planning began I realized this was therapy.  For me.  I don't know what birthdays will bring from here on out but I thought it was time to start enjoying their day.  So on St. Patrick's Day (Olivia's b-day) we had a rainbow party for both girls.  It was an awesome day,  complete with family, corned beef, Guinness, a scavenger hunt, leprechaun sightings, etc.

Notice one of our litte pinterest projects hanging from the ceiling.  These were yarn balloons described by the crafty moms as 'easy peasy'.  Let's just say wet gluey yarn, slippery balloons and a seven year old mixed together is far from easy peasy but we had a lot of fun making them.  Ava stayed up late with John and I and we worked on our little creation together.

John came up with a little device for Ava to use to make sure the yarn didn't get tangled and it had just the right amount of glueness.  She loved it.

Olivia was a little hesitant when it came time for cake.  After she got over the sticky hands, she dug in and enjoyed.

My little leprechaun (sporting Kendra's hat) enjoying her new ladybug toy compliments the Lummis Family. 

Pinata time



     

I'll have to post about the rest of the madness later.  Olivia's up from nap and protesting : )

Did I Ever Tell You How Lucky You Are?

In just the past couple of weeks...

My sister and her family came to our house to spend the night with ALL three kids so John and I could have a night away.  My sister got up with Olivia at night, included Emmy in cousin play and kept the other kids entertained.  Wow.

My friend Kendra dropped off dinner AND some adorable hats she made for my girls...just because.

My friend Foula came by to give me ingredients to make cookies that I love...just because.

My friend Kate and her darling daughter have come to watch Olivia while I take Em to therapy. 

Emmy's speech therapist took time out of her busy day to call and rave about Emmy using her Tobii at school. 

Olivia started pulling up on everything, chatting up a storm and 'reading' books...amazing.

My friend Megan and her daughter Lauren (in Emmy's class) invited Em over for a playdate.

Ava helped Emmy out of bed and then held her hand by the stairs and yelled, "Ummm, excuse me, will somebody help my little sister down the stairs?"

My husband, well the list is too long.  He surprises me everyday with his dedication to our family.

I am feeling like one lucky girl.

And I'm especially lucky I get to hear Ava and Emmy giggle everytime I read their favorite part...

"Be grateful you’re not in the forest in France
Where the average young person just hasn’t a chance
To escape from the perilous pants eating plants
But your pants are safe, you’re a fortunate guy
You ought to be shouting how lucky am I”
― Dr. Seuss, Did I Ever Tell You How Lucky You Are?

Winter

Our winter can be summed up in one word...SICK.  Up until about the second week in February, someone in our house was down and out.

It started the first night of Christmas break.  I went and got Panera for dinner and we all happily celebrated the beginning of break.  That was the beginning of the end.  That night Ava recited her famous line...'I think I ate too much dinner'.  This is code for...'Mom, Dad, you will be cleaning up puke tonight.' 

It was the flu, complete with five full days of high fevers for all.  But I am happy to report that after some viruses here and there, we are all healthy now.

We had plans to go to my parent's house for Christmas but since Ava was sick, we stayed home.  We have never spent Christmas at our house so I was a little unprepared.  We ran out and got some stockings and a couple of extras.  Other than some sickos, we had a great time just the five of us.

And since we finally got some snow, we've been cruising around the neighborhood on our sleds...

 Emmy kind of looks like Ralphie from A Christmas Story, right?