Dress Up Time

Around 4 pm or so these two start getting a little restless.  The hats, scarves, dish towels, safety pins, yarn, crayons, tape and other random household items come out and it's dress up time.  Emmy is such a trooper.  She pretty much goes along with whatever story line Ava has created...





Emmy mid-flick

 

For some reason dress up time with Ava always involves tape.






The flying fairy...



...and some kind of chinese princess

This is Rapunzel...with homemade hair.



And here's the prince...also with homemade hair!



My Therapists

There are so many therapists in my life...that work unpaid.  Mainly, my parents, sister and brother.  These four have listened patiently and loved unconditionally.  They've helped me wade through the deepest, scariest waters.  They've reassured me, telling me I can do this even when I think I can't.  And I am just beyond grateful.  I've realized that I'm not the, "pull up your big girl undies and move on" kind of person.  When the shock and saddness hit, I had to take the time to feel it.  I had to let myself get all the way to the bottom of it and rest there for a while.  And had I not taken that rest, I think I may have exploded.  I needed to call my family and repeat myself a million times and have them tell me it was going to be ok.   And now, after many months of digesting our new reality, the saddness has subsided a bit.  It still washes over me, knocks me down, but it takes less time for me to get back on my feet.

I feel like I've found a way to grieve but still live life.  Be sad about Emmy's struggles but still find joy. There was a time when I wondered if I would ever feel joy again.  It felt like no matter what I was doing a piece of my heart was dark.  Nothing felt complete.  But over time I am getting better at pushing the Rett monster aside and trying to focus on whatever small joy may be presenting itself at the moment.  Rett Syndrome will be there, it doesn't need my immediate attention all the time.

Never have I had to deal with a difficult situation that I wasn't able to push out of my mind, if even for a brief couple of minutes.  There has always been some distance.  But Rett Syndrome is an every day, in your face, kind of struggle.  And to top it off the person who is struggling is someone who owns a piece of your soul.  It has just taken me a while to figure out how to live with this battle and still find joy.  During one of the MANY converstations I've had with my dad throughout this time he told me that living with joy is a choice you make.  Ok, easy to say, harder to do when you're watching your daughter regress.  Then he shared a story with me...a piece of his childhood that I never fully understood.  Throughout his childhood his father had heart attacks year after year after year.  He had a host of medical problems that left him unable to work and in pain.  My grandma worked long, hard hours and my dad went off to school each day.  He said when they returned home they were never quite sure what they'd find.  This went on for years.  As a young boy he had to figure out a way to live life, enjoy life and focus on all the goodness that surrounded him.  This story not only gave me a little insight into what has made my dad, my dad...it gave me strength.

My therapists, whether it's my family, other rett moms, neighbors or friends have sat with me and listened.  It's really remarkable.  They haven't tried to 'fix' things... they haven't offered up one liners like "It's God's plan" and walked away.  They've sat by my side and let me grieve, letting me know it's ok to feel.  Really, what would I do without these people?  I just hope I can be that person for somebody else.  That I can be a good enough friend to just sit by their side and listen.   




  

Winter Walk

Ava has been asking if it's really winter.  There has been pretty much NO SNOW in Chicago until today.

They all came in with smiley, red faces.  John said at one point the sled flipped over and they both went face first into the snow.  He thought Emmy would start screaming.  Nope.  She was just happy to eat snow without having to make her hands cooperate!

Holidays

Christmas, New Years and all the days in between had a different feel this year.  There were some emotional ups and downs but overall not as hard as I thought it would be.  Surprising, I know!  When we celebrated Emmy's 3rd birthday in August I had talked myself into being excited about her little family party and I thought it would be great.  Well, when the day came it was HARD.  Much harder than I thought it would be.  I've come to understand that the saddness hits at very unexpected times.  I never know what will trigger it (might have something to do with pregnancy hormones too).  But thankfully we were surrounded by our families throughout the holidays and just being with people who love and care about our little foursome seemed to make everything better.

We spent Christmas at John's parent's house...wish I had a bunch of pictures to share but just didn't get around to finding the camera.  Pure laziness!  I spent my time there sleeping in, enjoying A LOT of wonderful food and just hanging out with his family.  We went to Christmas Eve mass with the kids and both girls did amazing.  Emmy usually has a hard time at church but she just snuggled with John and was all smiles!  The message given at the service was one of hope...it was just what I needed to hear.  

 
Ava and Emmy love their Mimi and Grandpa's cat, Jack.  This cat is the most even tempered animal I've met.  He sits on his little perch while Emmy attempts to pet him.  Her attempts usually resemble hitting or flicking and he just stays put and takes it!  The look on his face says it all.

The following Friday John got home from work and we made a last minute decision to drive down to my parent's house (near St. Louis) for New Years.  It's about five hours in the car so I brought along my huge body pillow and tried to stretch out the best I could.  I'm so tired by Friday that I passed out with the girls early in the trip and John chugged his coffee to stay awake. 

Again, I took no pictures...boo.  But we did have a wonderful time!  New Year's Eve night my mom made a huge Mexican feast, we played dominos (although my dad secretly wanted to be playing bridge : ) and I actually made it until midnight.  My brother, his wife and three boys came over and the cousins ran wild together.  Uncle Kyle is always the entertainment...playing all sorts of chasing games the kids love.  One day I'll get a video of the action, it's pretty hysterical!

I did manage to get my act together and get out a Christmas card AND it's a picture of our whole family.  Getting a picture of the four of us is a daunting task so I usually just send out a picture of the girls.  So I'll leave you with the Foster Four, soon to be FIVE...I'm starting to get a little nervous about that!

 



Going on 24 Weeks!

Finally a belly bump picture!  I've been feeling great other than the usual stuff, occasional heartburn, backaches, whatnot.  I'm feeling lots of little (and not so little) kicks which I think is the best part of pregnancy.  John felt his first kick the other day too : )  I know we've got about half way to go but I'm getting pretty excited to meet this little girl!  

Also in October...



messy hair emmy in her tinker bell jammies



Master Tigeress (many thanks to Grandma E. for making her costume!)

and the Dragon Warrior!



Wearing her Cardinals shirt, enjoying some World Series action!  This is about the fourth inning ;)
Sorry dad

After trick or treating bonfire at the Rossi's

the girls discovered pixie sticks...yikes!

apple picking

Emmy at school!

Natural History Study

This past weekend we took Emmy to her first Natural History Study for Rett Syndrome at Rush in Chicago.  This is basically a research study of the natural progression of the disease over time.  Since Rett Syndrome wasn't identified in the U.S. until the 80's there is not a lot of data out there that provides a clear picture of this disease.  Once the medical community knows more about the disease then they will be better able to come up with treatments for the girls.  So not only do we help the research process by participating we also get to ask questions and actually get answers!

Yep, get answers!  Instead of walking into a doctors office while they're googling Rett Syndrome we got to talk to doctors who work at a Rett Clinic at Baylor College in Houston.  They see girls with Rett Syndrome all day, every day.  Any weird problem we threw their way, they pretty much had an answer.  I fired off questions while John had the pleasant task of keeping Em happy for hours and hours in these tiny little exam rooms.  There were no invasive tests, just some measuring and lots of questions to answer.  There were times when I was sitting there that I felt like the whole situation was so surreal.

Really, is this happening?  Am I really sitting here asking questions about seizures and life expectancy?  Will I wake up anytime soon?

Nope.  This is as real as it gets.

So although it was not the first place I would've picked to spend a beautiful fall Saturday afternoon, it was where we needed to be.

Hello, my name is Emmy.  I would rather walk the hallways and press elevator buttons than listen to a bunch of neurologist answer questions at a panel discussion.  Dig my crooked part?

Playing "Daddy Flick Face".  Just some of the abuse John took that day : )

One of the most interesting things we learned is that, in their data base of MECP2 mutations, they were unable to find one that matched Emelia's.  Is this good or bad you ask?  Well, that is one answer the doctors didn't have.  There are about eight mutations that are common but over 200 recorded.  The eight mutations that are common have been studied a little further and they can make some predictions (although not always right) based on a girls gene mutation.  But our Emmy is one of a kind : )  No predicting here.  Just more hard work and another round of "Daddy Flick Face".