by Sarah | Dec 14, 2017 | All About Denver, All About Erik, All About Family, All About Kennedy, All About Me, All About Molly, All of Us, Blogging Life, Disney Mom, Make-A-Wish, Redefining Perfect, Universal, Universal Studios Mom
Our trips to Universal through Make-A-Wish were amazing. Hands down. The cast members, the rides, the amazing treatment we received. Universal WAS Kennedy’s wish. She wanted to see Harry Potter world. That was her ultimate goal.
We had the best time.
We also had a strange curse afflict us while there.
See, we had two days at Universal. That was more than enough time to ride every ride we wanted to ride. Even some we weren’t sure of.
Both years, we were able to ride every single ride, but one.
It was always one we really wanted to ride. Always.
On our first visit, we made it through most of the rides on our first day. We decided to save Big Mama…i.e. Rip Ride Rockit for our second day, on the theory of saving the best for last.
Our second day at Universal happened to be November 1st, and an odd thing happened that day. The weather decided that since it was November, it was going to show us how cold Florida was capable of getting. The temperature dropped into the 40’s (Thank goodness we had our jackets from home with us), and the wind picked up like you wouldn’t believe. The sun was shining bright though, so we set off on our newest adventure…
Here’s the thing…like I said, it was windy. Rip Ride Rockit starts with a super-tall straight-up climbing tower of track.
High winds.
Tall tower.
See where I’m going with this?
The ride was closed for the day. We hung our heads, made sad faces, but figured it was all right because Kennedy wasn’t tall enough to ride anyway. We didn’t know when we’d be back, but we figured once we did go back, K would be able to ride, too. (And she did, but that’s another story).
The second time we went was for Denver’s trip. He’s not a roller coaster person, but his Mimi (my mom), totally is…and by his request Mimi had come with us on the trip.
Because of the incident the year before, we made Rip Ride Rockit our top priority. We rode, it was short but glorious, and has a story to tell later.
As we made our way through the parks with my mom, I was excited to take her to the Hulk coaster because it had been so amazing the previous year.
After much of the day we finally get there to find what you see in the picture over there. The ride was closed, being torn down in Universal’s plan to make it even better. By all accounts, the new ride looks amazing, but it totally cut yet another coaster out of our trip.
I can’t say enough good things about Universal and their staff…
But whenever we do return (2019, maybe?)…I’m going to plan to fully expect at least one awesome ride to be down for whatever reason might occur.
Maybe if I plan, and expect such a thing I’ll be pleasantly surprised and the ride will be available. Yeah? Maybe?
by Sarah | Dec 9, 2017 | All About Denver, All About Kennedy, All About Molly, All of Us, Redefining Perfect
We all know kids say things that can be odd, funny, clever, occasionally embarrassing, and sometimes disturbing. I wish I’d started keeping track of some of these much sooner…but I’ve gathered together a few favorites from the past few years, and one from a bit further back. Rather than just list them, I’ve made some graphics for fun.
by Sarah | Aug 16, 2017 | All About Denver, All About Erik, All About Family, All About Kennedy, All About Me, All About Molly, All of Us, Disney, Make-A-Wish, Redefining Perfect
There’s a weird thing that happens once my plane touches down in Florida.
Technology becomes unnecessary.
I’ll be the first to admit that when I’m at home, it’s everywhere, in everything. I work on my computer, I play on my computer (and phone). When I’m away from it too long, I get a little twitchy (although I’ve found this to be less and less of the case since in the past couple of years).
I’ll admit, on our first trip in 2014 while I didn’t have my phone out at all…the first couple of days I had out our camera taking pictures of EVERYTHING. No joke, I’m still editing photos 3 years later.
Then, rather quickly, I stopped snapping photos every two seconds.
I realized I was seeing our vacation through the screen of a camera. I wasn’t living it to my fullest extent. I was having fun…but I wasn’t IN it.
So I put the camera (mostly down). I pulled it out for big moments. I pulled it out for some cool shots…but I let the Disney photogs do their duty and dove headlong into it.
I never regretted a moment.
I never missed my phone.
Disney has a lot of magic.
For me, a huge bit of magic pulled me away from screens and showed me how much I don’t miss them if I’m living.
I’m looking forward to our next trip in a couple of weeks.
I’ll be putting away the phone and soaking in the fun!
by Sarah | Feb 22, 2017 | All About Kennedy, All About Me, All About Molly, All of Us, Autism, Blogging Life, I'm A Reader, Redefining Perfect, Special Needs, Wordy Wednesday
The first time I saw “The Baby-Sitters Club” in graphic novel form, I rolled my eyes.
“Why on EARTH would they make those into graphic novels when there are perfectly good books out there?”
It annoyed me.
It seemed a cheat.
I was a snob.
It took me looking at my child, my Molly, eagerly reading for the first time in ages after declaring she now hated reading. Her attention span wasn’t enough for chapter books to hold her interest, but graphic novels were another story.
It took me letting go of my bias to see how graphic novels could benefit a child like my girl.
I picked up those exact Baby-Sitter’s Club books for Molly at the library.
I picked up a bunch of graphic novels for myself to try.
I found I don’t care for the comic-book ones…but those that tell a story (or stories), I enjoy.
My favorites so far have been Through the Woods and Amulet. I have several more to try, and I’m excited to do so once this chaotic work week is over.
The best part of opening my mind has seeing my daughters both excited to read again.
Molly is so excited that she’s actually begun picking up chapter books again.
Kennedy is enjoying interspersing her chapter books with these quicker reads of graphic novels.
I’m enjoying expanding my painfully narrow repertoire of reads to include something different, and learning what I like in this new area.
So, in short…you can teach an old dog like me new tricks. It just takes me letting go of my bias and opening my eyes to see the benefits.
So now that I’ve opened my eyes, I need your help!!
What are the best graphic novels for my girls?
What are the best ones for me?
by Sarah | Jun 20, 2016 | All About Molly, All of Us, Autism, Connective Tissue Disorder, Redefining Perfect, Special Needs
We waited a month for this visit.
In the grand scheme of “waiting for a specialist” times that has ever been for us – a month isn’t bad.
Still. We waited a month. Worried over her shoulder, and what the doctor would say. Our geneticists suggestion of “Connective tissue disorder” ringing in our ears.
We worried.
Hoped for the best, expected the worst.
Wondered over whether there’d be an MRI. Or possible surgery.
Of all our fears we never once expected it to become what it was.
We never expected to be left wondering how a visit to a specialist would turn into a horrible vaudeville joke.
“It clicks when she does this.”
“Well, then don’t do that.”
~blink blink~
You would think I was exaggerating.
But I’m not.
None of our concerns were truly addressed.
We were dismissed with a prescription for therapy for “Scapular strengthening”. Told that she shouldn’t click her shoulder. And that was that.
No words about the connective tissue question.
He barely touched her shoulder, only tested her strength.
The geneticist spent more time on her shoulder than this doctor. He didn’t check to see if her arm dislocated like the referring doctor did.
An X-Ray.
A bad vaudeville joke (and he wasn’t even kidding).
And no answers.
Still.
I don’t even know where to go from here.
by Sarah | May 10, 2016 | All About Molly, All of Us, Autism, Connective Tissue Disorder, Redefining Perfect, Special Needs
I should have known better.
My first mistake was getting “comfortable”.
As comfortable as anyone can when you have three special needs kids.
Everyone was doing well, no major incidents for two years (*knocks on wood*). I was well-adjusted to our current status, our version of normal. Our version of perfect.
Were there hiccups? Well, sure. We have two girls on the verge of tween-dom and all the drama that comes with. Drama we’d been through with the now-teen.
But overall, we were good. We had things handled. IEPs in place, regularly scheduled doctors visits…in fact, we’d gone down in occurrences of those (from quarterly to every third, or half a year).
During our month of hell, part of the trauma was dealing with issues with Kennedy and Denver and their new doctor’s ways that we didn’t like and his poor poor choices. Situations we are still coping with, but wish so much up in the air, we are in a holding pattern (I hate holding patterns).
Then there is Molly.
Several months ago we were hanging around the house. I had my hands on Molly’s shoulders, and she moved. Immediately I noticed something odd. A very pronounced clicking when she moved her shoulder. I asked her if it hurt, it didn’t. I knew it wasn’t right, but with the chaos of all the crazy around this house it got pushed to the background.
Then today we had her regularly scheduled autism checkup with her geneticist/neurodevelopmental doc. We love this man (if not the hospital he’s affiliated with), and he’s been great with Molly from the start.
So I said, “I know this isn’t your area, but could you check out this weird thing?”
He checked her shoulder, had me do the same to look for a specific issue, then had her lie down and rotated it, checking everything. As she sat up, she decided to show him how she can bend her fingers in hyper-flexible ways. “Isn’t that cool?”
And so, the doctor explained to me that Molly has no connective tissue in her right shoulder. When it’s rotated, it becomes dislocated and pops back in. It is bone on bone.
Add in the hyper-flexibility in her joints…and he thinks we’re looking at a connective tissue disorder–one that we aren’t specifically testing for yet.
First step–we must go to an orthopedic doctor for her shoulder and determine the best course of action. She’s to stop goofing around with it (she finds it a neat trick), and take it easy on it, even though it doesn’t hurt.
As for the connective tissue disorder (he did not specify which as of yet)…it’s a wait and see. Deal with her shoulder first, watch for other symptoms (migraines, heart palpitations).
We are once again in the “hurry up and wait” world.
I hate being here.
With a white hot passion.
I was definitely stupid to get comfortable.
I know better.
Our trips to Universal through Make-A-Wish were amazing. Hands down. The cast members, the rides, the amazing treatment we received. Universal WAS Kennedy’s wish. She wanted to see Harry Potter world. That was her ultimate goal.
Our second day at Universal happened to be November 1st, and an odd thing happened that day. The weather decided that since it was November, it was going to show us how cold Florida was capable of getting. The temperature dropped into the 40’s (Thank goodness we had our jackets from home with us), and the wind picked up like you wouldn’t believe. The sun was shining bright though, so we set off on our newest adventure…
The second time we went was for Denver’s trip. He’s not a roller coaster person, but his Mimi (my mom), totally is…and by his request Mimi had come with us on the trip.
