Thursday, April 18, 2013

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.





  1. Dear Colleen and John, Ava, Emmy and Oliva,

    I had a wonderful conversation with your Mom the other day. She shared her version of the Disney World trip and now I have read yours and seen pictures. Wonderful! Full of giggles, smiles, a few tears as you said, but a much needed adventure. Loved reading your blog. You write with your heart and your head. Love, "Aunt" Kathy xxoo

  2. The pic of your car is killing me. That is hilarious! Can't wait to see your cute family again. Soon!

  3. Oh my gosh! What an adventure. I just loved these pictures- thanks for sharing!