Thursday, April 18, 2013

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.




Tuesday, April 2, 2013

March Madness

John, Ava and Olivia's birthdays (and Ancho's unofficial, made up birthday), a trip to Florida, Easter and D 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 : )