Wednesday, March 13, 2013

"She won't know any better"

Those were meant to be comforting words by a well-meaning person in reference to Caroline's diagnosis.

I didn't like what those words implied. Did they mean Caroline would regress to the point where she would never be aware of her differences? Or did they simply mean that a person can't miss something they've never had? I remembered being angered by the condescending tone of that "reassurance." I remember also secretly hoping that some of it would be true. Rett Syndrome is often described as trapping someone in their own body. The thought of Caroline being sad or frustrated because of her disability was just crushing.

In the 21 months since receiving Caroline's diagnosis, we've learned that Caroline is aware of her condition. And she is indeed frustrated by the limitations and challenges caused by Rett Syndrome. Caroline screams or cries when we can't figure out her urgent vocalizations. She fusses when she can't move towards something or someone. She struggles unsuccessfully and complains when she finds herself on her stomach or on her side. She looks down with sadness when we talk about her condition in front of her.

Caroline has multiple and severe physical disabilities, but it's clear that her inability communicate is the biggest source of sadness and frustration for her (and us). Yet I can't help but find some comfort in Caroline's tenacity and determination around wanting to be understood. She wants to say things. She wants to be heard. She is smart.

To anybody who doubts it...yes, Caroline is "in there." And she does know better.

Pictures from last week. 

Caroline loves to snuggle with me. I absolutely love that she lets me smother her with my "intense" kissing and hugging. haha!





Saturday, March 2, 2013

Caroline's first trip to Disney World

We had a memorable family vacation in Disney World last week. I'm still feeling very nostalgic about our week together.

When Min and I signed up for the Disney Princess Half Marathon with the GP2C team, Mike and I decided to make a family trip out of it. We asked our moms to join us. And Min brought her husband Jon. We could not have taken Caroline if Mike's mom and my mom had not come with us on the trip. The words "thank you" aren't enough to describe our appreciation. Their generosity and help was invaluable, especially given some of the unforeseen stress resulting from Caroline having Rett Syndrome (not to mention that fact that I was going to be out of commission because of the race and related activities!).

Overall, Caroline had a good time. She LOVED being around her grandmas, her uncle, and her auntie. And she was stimulated by the new sights, sounds, and environment. She got to hear songs and see characters from The Little Mermaid and Beauty and the Beast, her two favorite movies. She enjoyed rides including It's a small world, Haunted MansionMickey's PhilharMagic, and the The Seas with Nemo and Friends. Disney World in INCREDIBLY accessible, which made navigating the parks an easy and enjoyable experience. The best part of the trip was sharing one of our favorite places in the world with Caroline and our family (this is the part where I tell you that Mike and I love Disney so much that we went there on our honeymoon five years ago!). Another bonus? Even though I ran a half marathon, I still felt like I got much needed rest (mental and physical) thanks to our moms.

The trip did have its challenges. As I've mentioned before, traveling is getting tough for us (for a previous post on this, please click here). A few hours of travel usually exacerbates Caroline's involuntary movements to the point where they keep her from getting a good night's sleep. It is difficult for her to recover because of her inability to nap like a typical child. But like any other kid, a tired Caroline is a pretty miserable Caroline. Adding to Caroline's frustration is her inability to tell us how she feels. Using the toilet was also a challenge. She's too big to be "changed" like an infant or young toddler, but too little and physically disabled to "go" like a typical child. Unless we were in the hotel room, Caroline had to pretty much go in her diapers which was unfortunate. Caroline has had about a 95% success rate using the potty since last summer. She often gets upset when we don't pick up the signs and she ends up going "number two" in her diaper.

The other major challenge we encountered was around feedings. Caroline eats everything we eat, except that her meals need to be pureed to the consistency of "stage one" baby food. Small soft chunks or thicker consistencies usually result in gagging, choking, and throwing up. We packed a bunch of baby food with us, but Caroline made it clear she was not pleased with the veggie selection. On our second night in Florida at a restaurant in Epcot, she was so disgusted with two bites of pureed spinach and peas that she proceeded to throw up everything she had eaten that day. When this happens, she doesn't complain or cry. She just turns red and sweats profusely while she gags and silently vomits. It was a scary sight, especially since she was already dehydrated from the heat and the constant spitting up from her reflux. Caroline has been on reflux medication for two years, but she still spits up/throws up an average of 10-15 times a day (as a side note: her reflux has gotten worse lately so we are seeing a specialist at Children's Hospital soon to discuss possible next steps). Anyway, Caroline was usually done for the day by 5pm. And since eating and vomiting had became problematic, for the remaining two nights, our moms generously offered to stay in with Caroline. They took turns staying with her at the hotel so that the rest of us could go out to dinner. Our moms jump at every opportunity to make our lives a little easier.

I also want to mention a relatively new development. I don't like the way some people stare at Caroline. Sometimes, I can see that they are looking at her because she's cute. Other times, I can tell that they are staring at her because her differences are obvious now. I detect curiosity, pity, and even annoyance sometimes. She has involuntary movements. She is non-verbal and vocalizes like an infant. And she's developed a habit of screaming. Caroline is at the point where she is truly frustrated at her inability to communicate very specific things (or discomfort in general) so she yells at the top of her lungs. Even though we're annoyed at people for staring at her when she does it, we're also very uncomfortable with any disruption we may be causing. The two-hour plane ride was exhausting for that reason. Mike and I were anxious about her occasional high-pitched screams. There were other young children doing the exact same thing, but this is a new thing for Caroline and we're not used to it yet. Caroline has always been very quiet. No crying, no tantrums And now, we have this random loud (SUPER loud) shouting when she can't make herself understood. People also stared at us like we were part of a very fascinating 5-minute live show whenever Caroline was lifted and secured onto the Disney resort/park buses. The staring was so intense and ridiculous that even Mike (who rarely notices this type thing) got annoyed. I can understand a glance here and there, but the continuous staring during those times was simply odd. For now, we smile and pretend not to notice. I just hope Caroline doesn't notice...or doesn't care.

Some highlights from Caroline's experience in Disney World 


At the airport
Caroline loves Grandmom's singing!
 Ready for take-off.
Caroline seemed excited :-)
 Just landed! Caroline watched her shows
 (and let out a few occasional screams too! Ack!)
 Waiting for the airline staff to bring Caroline's wheelchair
 One our way to Disney!
 Mike and his mama
Caroline with her Abu and Grandmom
 The Kimchis
 Happy girl enjoying Disney World
 Caroline and her Auntie (aka her "second mom")
Enjoying a ride at EPCOT
My mom took Caroline to various rides 
so the rest of us could go on some "grown up" rides :-)

 On our way to celebrating our successful runs!
 Sweet picture of Caroline and her Grandmom
 Me and my honey.
 My Nirvana!!!
Classic shot of Caroline in front of Cinderella's castle.
(Caroline often wore a big plastic bib because of her constant vomiting)
 Having a snack
 My princess Caroline
On the left, a picture of me and Mike on our honeymoon 5 years ago (2008).
On the right, the three of us :-)