Sunday, December 22, 2013

Toy stores and Rett Syndrome don't mix

It’s not easy for me to admit this, but toy stores make me feel sad, anxious, and even resentful at times. For me, walking around a toy store is like getting a tour of various landmarks that scream “this is what Caroline’s life would be like without Rett Syndrome.” 

It’s been almost three years since Caroline lost purposeful use of her hands. I got my first glimpse that something was wrong while watching her play with her toys. That first image of Caroline struggling to pick up one of her stacking cups is permanently ingrained in my memory. By the time we got a diagnosis, Caroline could no longer grasp or hold anything. Her toys quickly became a painful reminder of all that was lost. I was so consumed with feelings of grief and helplessness that I ended up giving a lot of them away.  

When Christmas rolled around that year, Mike got a bunch of toys for Caroline “from Santa.” He didn't focus on the fact that she couldn't manipulate them. He just wanted her to experience Christmas and Santa the way he did as a kid…the way most typical children do. Inspired by his approach, I decided I needed to make a real effort to get over my issues by finding Christmas and birthday presents for Caroline on my own. This is a very basic task for a parent so I should be able to do it, right? Well, it’s been more than two years and I have not made much progress. I still struggle with the concept of toys; the pain associated with them is still there. I noticed that I go through the same thought process every single time I attempt to find a gift for Caroline that doesn’t come in the form of a book, CD, or DVD. But I still push myself to do it even though deep down inside, I don’t really want to. Before I leave the house, I always say something along the lines of “I don’t know what to get for Caroline. This is really depressing.” And Mike always responds with “I know. But, it will be okay. Just get her something that’s age-appropriate.” I tell him I have no idea what kids her age are into so he gives me a few suggestions. And off I go.

Here’s what goes through my head when I visit a toy store.   

This is not my world. 
 
I always start by telling myself the same thing…maybe if I walk around long enough, I’ll somehow magically find a toy Caroline may be able to enjoy. But as I look around, I notice things I've somehow trained my eyes to ignore at all other times…images of children doing typical kid things. All around the store, I see pictures of little girls playing, running, drawing, holding hands, and doing things I daydreamed about when I was pregnant. I can barely look at these images without getting knot on my throat. If I dwell on my feelings too much, my eyes start to well up. How is it that I manage to live in a bubble all year around? The last thing I want to do is get emotional in public so I pull myself together, and do my best to act like the other parents in the store. When I’m around typical families, I don't feel like a "real" parent. I feel like I'm faking my way, pretending to understand a world I know very little about.  

Caroline is not a baby and yet here I am in the baby section. 
Inevitably, I find myself in the Baby section. That aisle has a tendency to create a sinking feeling in the pit of my stomach. It reminds me of our life before Rett—a time before wheelchairs, braces, sensory issues, complex communication needs, therapies, IEPs, seizures, and parents outliving their children. I always seem to gravitate towards the baby section in hopes of finding something Caroline may enjoy that’s not too “baby-like.” The truth is that there’s no such a thing. I often feel like I’m being punched in the stomach whenever someone compares or associates Caroline to a baby. It undermines her. So why am I in the Baby section looking for a toy that doesn't exist? 

Caroline is missing out on so much. Life can be so unfair sometimes. 
Still empty-handed, I drag myself to the section with age-appropriate toys for Caroline. I start to wonder what four-year-olds are into. Barbies? Dolls? Kitchen sets? Why are there toy brooms in the “girl” section only? Sigh, I don't want to reinforce gender roles. Wait a minute, why am I even worrying about things that have no bearing on Caroline's reality? I find myself standing in the middle of the aisle, feeling clueless around all these toys and activities. I catch myself observing other kids and their parents for clues. Gosh, their lives are so different than ours. These parents have no idea how lucky they are. They have the luxury of hearing their kids’ interesting and complex thoughts. Their kids are able to express their individuality. Why was Caroline given such a difficult life? She’s so full of innocence and love. She doesn't deserve this. But life doesn't come with any guarantees. Crappy things happen all the time, whether you think you deserve them or not.

But Caroline is still a kid--she should experience these “typical” childhood things! 
Usually, after 30-45 minutes or so, I realize I need to do what I came here to do. So what am I going to get for Caroline? She’s into princesses right now. Will she enjoy dressing up like one? She also seems fascinated when she watches me put makeup on. Maybe she would like pretend makeup? Or is she too young for that? What message am I sending? Ugh, I need to just chill out and stop over-thinking everything. Besides, Rett Syndrome is horrible, and I have no idea what the future holds. I should get something fun. I should just spoil her. Still, as I place toys in the shopping cart, I can’t help but resent the fact that she can’t use any of these things on her own. But this is not about me. Caroline shouldn't miss out on silly or fun things because of her condition. I guess we'll have to "play her toys" for her. It will be wonderful, fulfilling, and sweet…I hope.

When I get home, I show Mike what I got. He knows how difficult this is for me, and expresses support and appreciation. I don't know how he always manages to find toys with so much more ease than me. And he seems genuinely excited to share them with Caroline, which in turn makes me less sad about the whole thing. 

When it comes to doing things that feel awkward and unnatural because of Caroline’s disability, I wish I could learn to put my sorrow aside and focus on the beauty. I just don't know how to fill that hole sometimes.  


My heart

Caroline's Christmas presents






Saturday, November 2, 2013

My "new normal" is not what I expected

When Caroline was diagnosed, I understood that everything in my life would be very different from that point on. I made a few assumptions...but life is always full of surprises.

I thought the gut wrenching grief that invaded my being would eventually be replaced by a feeling of acceptance, which I mistakenly equated to a return to some kind of normalcy. That initial debilitating grief did eventually subside. But I've learned that feelings of sorrow are constant, even when I forget they are there. I now know that my heart will continue to hurt for Caroline for as long as I live.

I remember wondering if I would ever feel joy again. What I didn't expect was to experience happiness on an entirely differently level. These moments are brief but they are powerful. Something as simple as Caroline giving me a sweet smile, or sharing a good laugh with a someone I care about, is enough to remind me that life is beautiful no matter how dark and challenging it may seem at times. I've finally learned to live in the moment and just focus on today. I've learned to be fully present with people. And gestures of friendship and support from those around me are crucial in getting me through each day. The good, which is plentiful, certainly outweighs the sad.

I feared my heart would harden, and I worried relationships would change. Relationships did change. I developed stronger and more authentic connections with people in my life. My heart didn't go numb, it actually grew bigger. Caroline taught me the meaning of profound and unconditional love, which in turn, has made me more in tune with the love I feel for people around me. But Rett Syndrome has also exhausted my ability to put up with judgment and insensitivity.The few people who pitied us or were uncomfortable with Caroline self-selected themselves out. No hard feelings.Things have a way of working themselves out.

I thought I would be left with just one identity--special needs mom. To clarify, of all the different hats I wear on a daily basis, being Caroline's mom brings me the most pride and fulfillment. But for many months after Caroline's diagnosis, I could not see myself succeeding or finding satisfaction in any other role. I realized now that I am not defined by Caroline's diagnosis. I can still be "me." I'm still a partner to Mike beyond our parenting roles. I can still pursue my career, which is incredibly fulfilling to me. I can continue to nurture relationships with family and friends. And I can be silly and light. Aside from grounding me, these different aspects of my identity help me become a better mother to Caroline.

I thought I could remain part of the "general parenting world" (for lack of a better word). Instead, I find myself sitting on the sidelines. My only experience as a mother is with a physically disabled child. When the issue of (typical) parenting comes up in conversation, I often feel like a stranger trying to fit in, trying to understand social norms that no longer make sense to me. Priorities and visions for the future are fundamentally different. These paths are certainly not created equal. And I often get harsh reminders that our life is considered far from ideal when I stumble into conversations reminding me that Caroline represents every parent's worst fear. I completely understand those concerns because I was once there too. But it still hurts to hear those things. My protectiveness towards Caroline overpowers my ability to think rationally in those moments.

I've found that I cope better when I tune out society's messages about what happiness and success should look like. For whatever reason, Caroline's diagnosis has brought everything into focus. It's made me more aware, more awake. I like who I've become. I just wish it hadn't come at such a high cost to my Caroline. She suffers and struggles in ways that are unimaginable to most of us. And that's just not fair.




Thursday, September 26, 2013

Some dreams are still possible

Almost two years ago, I wrote a post on this blog titled "what would Caroline say?"
I read it again this past week with an overwhelming sense of wonder and gratitude. In the post, I described my dream to communicate with Caroline. I also talked about our wish for Caroline to have access to an eye-gaze computer.

Rett Syndrome can really do a number on hopes and dreams. Looking into the future can make me spiral down into a rabbit hole of fear and dread. I had to accept what was robbed, but I also allowed myself to remain cautiously optimistic about certain things. For some reason, I've always felt communication was within our reach. That dream is now closer than we ever imagined it would be at this point.

Before I continue, I'd like to share my personal opinion about skills and Rett Syndrome. I feel like parents are often inadvertently blamed or praised when it comes to their disabled children's skills. To me, Rett Syndrome is the ONLY culprit for missed milestones. Conversely, its occasional mercy allows for some skills to flourish. And each and every single one of our girls has unique strengths. I believe our girls' particular skills are a reflection of how the disorder has decided to manifest itself. I think therapies are incredibly important and necessary (and can often maintain or improve skills), but they can only do so much to fundamentally change what Caroline can and cannot do. Some girls walk, some girls have better use of their hands, and some girls can communicate with a little more ease.

Rett has left Caroline severely physically disabled, but it has also cut her a break by allowing her to express certain needs. I still feel like Caroline and I are separated by a wall that prevents me from hearing what she's telling me, but her eye-gaze computer has started to crack open a door. Caroline can now tell us when she's thirsty, hungry, sad, happy, etc. She tells us if she likes something, and she certainly lets us know if she doesn't. She is able to call for specific people. She even picks who gets to feed her. Most importantly (for her!), she has mastered the use of several different symbols to express her most frequent and urgent need: "Want. Yo Gabba Gabba. Please. Play. Yo Gabba Gabba. Want. Please."

I savor every word she says. And I hope we can eventually kick that door wide open.

I will work on taking video of her using her computer. In the meantime, here are some pictures.

Caroline's main page (each symbol opens up options for more words)

Sunday, September 22, 2013

Running away from Rett Syndrome...until it catches up with me again

Focus on the positive. Focus on the positive. 
Be grateful for what you have (which is a lot).
We are going to be happy despite Rett Syndrome. 

This mantra runs like broken record inside my head.
I took it so far that it ended up blowing up in my face.

I learned to cope with my sadness by tucking it away where nobody could see it, especially me. I also got good at distracting myself from it. Keeping busy is key (and also easy given our schedules). Happy moments with Caroline are always the best distraction. I also have my job, which helps me escape back to a life where I am still "the old me." But the truth is that no matter what's going on, the sorrow is always there. And the difficult feelings bubble up to the surface when I'm alone with my thoughts. So I escaped them again by filling every possible quiet moment (in the car, when I run, when I clean, when I get ready, etc.) with audiobooks, podcasts, music, or comedy.

I did such a good job during the day that something had to give. My sadness, my fears, my anxiety, my anger--all these feelings started keeping me up at night, where there was no escape. The result? I ended up with a horrible long bout of insomnia that I'm still treating with medicine.

I don't think I will ever be able (or want) to change my naturally energetic and happy disposition, but I'm more open about sharing my most difficult feelings. I can say "this sucks" and not worry about people interpreting that as a complaint about Caroline. I'm no longer constantly trying to escape my sorrow. I finally accept that what I really feel is a combination of happiness and sadness, sometimes all at once. And I now know that I can acknowledge these feelings and still remain positive.

I'm starting to feel less alone these days.

Nothing melts away sadness better than seeing this little lady happy

Sunday, August 18, 2013

Yes, she is in there

Some may think my relationship with Caroline is one-sided.

Here's a little glimpse of the way Caroline connects with us. Her eyes and facial expressions say so much.


Saturday, August 17, 2013

Wednesday, July 17, 2013

Overwhelmed? Yes. Missing out? No.

That pretty much sums up how Mike and I feel on most days.

We often joke that getting through each day feels like a huge accomplishment. The added stress in our lives comes from navigating and managing a world filled with therapies, doctor appointments, on-going health issues, new (and sometimes scary) symptoms, social stigma, Individualized Education Plans (IEPs), accessibility issues, and yes...Caroline's high level of care. Caring for her every need is deeply fulfilling and comforting, but also exhausting at times. We are incredibly lucky to have additional help from Caroline's nurse and our moms.

Do we feel like we're "missing out" on certain aspects of parenting? Not at all. Those thoughts haven't really bubbled up since the couple of weeks following Caroline's diagnosis. Our lack of direct experience with typical children has certainly shaped our expectations. I enjoy watching my friends interact with their kids. I'm curious and fascinated. I often ask a lot of questions. But I don't look at them and think "Gee, I wish I had that too." Okay...I feel like I need to finally come clean about something. I don't long for a typical child. I don't feel like I'm missing out on certain aspects of parenting. Maybe it's ignorance, denial, a coping mechanism, or all of the above. I really believe that every experience is unique. Some people don't want a partner. Some couples decide not to have children. Some couples decide not to have a second or third child. Some moms decide to stay at home. Some moms decide to work. I don't think there's a specific formula for happiness.

The only person missing out on anything is Caroline. She expresses frustration on a daily basis as result of her inability to communicate what she wants or what she's thinking (for a recent post on this issue, please click here). She's the one who has to deal with the long list of symptoms that affect the quality of her life. She can't "take a break" from Rett Syndrome for a few hours like we can. I feel deep sorrow when I am reminded of the things Caroline will never get to do. But I'm at peace with the fact that the relationship I have with my only child with will never be "typical."

There's no point in fast-forwarding to the future, wondering about all the "could haves" and "should haves." We're just trying our best to live one day at a time. Be at peace with our life. And enjoy the present.

These pictures capture two of my favorite moments from the last couple of weeks

Saturday, June 22, 2013

Bittersweet moments

Some moments bring up feelings of happiness and sadness at the exact same time.

Caroline's teacher generously shared a bunch of sweet pictures from this past school year. The pictures revealed how much Caroline enjoys going to school. She's learning alongside other kids, she's included in every activity, and she's always part of the group. Seeing Caroline so engaged and happy at school made heart swell with pride and love.

I was also suddenly struck by her disability. I think I forget about it sometimes. And I couldn't help but notice that Caroline is the only student in a wheelchair. She's the only one who requires medical equipment to help her stand. She needs hand over hand assistance for both work and playtime.

Caroline will always be the girl who can't speak...the girl who requires help with every aspect of living. Caroline's vulnerability terrifies me. I can only hope that every person who comes in contact with her has a good heart and an open mind.

I wish for Caroline to always be treated with dignity, fairness, and kindness.

Caroline enjoying a show at school. I love that she's very much part of the group. 


One of Caroline's school therapists is helping Caroline play with a baby doll with hand over hand assistance.  


Thursday, June 13, 2013

Caroline watches her shows...A LOT (so what?)

Caroline watches several hours of Yo Gabba Gabba every single day. Her eyes are glued to the screen for the entirety of each episode. Her infectious giggles and laughter make us so happy that she has something she is able to enjoy this much. And yes, we pretty much let her watch as much as she wants. We realize this habit may raise a few eyebrows, but I think most people with some sense of compassion know to set judgement aside (or better yet, completely withhold judgment when it comes to our choices).

Below are pictures of Caroline enjoying Yo Gabba Gabba  
Watching with friends is the best
 

Monday, June 10, 2013

Caroline says "don't!"

I wanted to share a little update about Caroline and her eye-gaze computer. She's rocking it!

She learns the symbols pretty quickly so we keep adding new words. The symbols are also getting smaller to accommodate the additional vocabulary. She's successfully adapted to all these challenges.

I have a funny story. In the last couple of weeks, Caroline learned the symbols for "you" and "don't." Now, she uses them together almost every time I wipe her face or hold her face to minimize her involuntary movements (so that she can accurately target the symbols with her eyes). She even gives me a little grunt before she communicates "YOU DON'T!"

Point taken!

Friday, May 17, 2013

Our first week with the eye gaze computer

Wow. I just need to start by saying...I am incredibly grateful for advancements in technology!!

We've had the computer for 5 days now. Caroline's speech-language pathologist (SLP) is the only reason we have any clue about what to do. Megan is just so patient and so dedicated. More importantly, she listens. She cares about what works for Caroline (and for us too!). This "special needs world" can be terribly overwhelming, confusing, and intimidating for parents. It can certainly be isolating. For many of us, it is often filled with guilt about what we are unable to do and/or what we're doing "wrong." 

We had a bumpy start with just getting to know the computer during the first couple of days. Those first two days were spent learning how to turn on the device and getting to the correct settings (sad, but true). We also had to learn how to calibrate the computer to Caroline's eyes. Positioning Caroline and the computer correctly also took a lot of practice. Once we figured out the basics, Caroline was able to start using the device. 

Learning to use the eye gaze computer is like learning a new language...for all three of us! We decided that the first step to learning this "new language" was making a habit of using the device consistently. We turn it on first thing in the morning. We use it at every meal. And we are slowly incorporating it into other regular activities. The best part is Caroline's enthusiasm. She already knows that when she wants to tell us something (or answer our questions), she needs to look over at the computer to communicate. She then turns back to look at us for a reaction. This is all pretty darn amazing!!! 

Here are some videos from this past week 
(and some from January with the computer we trialed):

We are starting with this basic page. These "main" pages have anywhere from 8 to 166 symbols. Even as Caroline's pages become more complex, the symbols will remain roughly in the same area. For example, the symbol for "stop" will always be around the bottom right part of the page. This enables the user to quickly find the word they want to use.



The computer allows Caroline to gain some control over activities like eating meals. She can now tell us when she's ready for the next bite or when she's had enough. She says "more" and then opens her mouth. She also says "stop" when she hasn't finished swallowing yet. We've noticed that if we don't immediately react to her words, she goes back and says that particular word again. I took this video in the middle of her eating dinner.




Caroline's SLP created a page specifically for "yes" and "no" with the same symbols Caroline has been using for almost a year now. This page was the easiest for Caroline to learn because she's been using yes/no on a daily basis for 7-8 months now. 




Caroline practices using her eyes to target symbols with exercises like the one in this video. When she "catches" Dora with her eyes, the target moves somewhere else on the screen. The exercise increases in difficulty as it goes along. (this video was taken in January on a computer we were trying out)



Eye gaze computers allow for more than just communication. Caroline can play games or read books on the device. Here she is playing the xylophone with her eyes back in January.

Monday, May 13, 2013

Caroline has her own eye gaze speech device!

We have many days when we look at each other and think "can you believe this is actually happening?" Some of those instances are sad, some are upsetting, and some are filled with joy. Today's moment was a happy and emotional one.

Caroline received her very own eye gaze speech device. The device has a camera that captures Caroline's eyes as she scans different symbols and pictures on the screen. When she focuses on a particular symbol, the computer registers her choice and "speaks" for her. Please click here if you'd like to read a post about Caroline's first time trying an eye gaze computer back in October 2012.

For the last 7 months, Caroline has been trying out different eye gaze devices to determine the most appropriate for her. Using one's eyes to point to a screen in order to communicate is a MUCH harder task than it looks. It takes a lot of practice and patience. For Caroline, who already struggles with apraxia and involuntary movements, the challenge is even greater. But Caroline has been working hard with a speech language pathologist to learn to correctly target and "hold" her eye gaze on specific symbols to communicate. In addition to successfully learning to make choices between activities, Caroline has also learned to consistently say "yes," "no," "go," and "stop."

I have no words to describe the excitement and gratitude we feel to have this speech device available for Caroline to communicate autonomously.This is life-changing!!

Here's a picture of Caroline and her very own eye gaze computer! It's pink!! She picked the color (naturally).   

Here she is letting us know (on a rented computer back in March) whether she wants to play with a toy pig or have us blow bubbles (which she loves!).  


Saturday, May 11, 2013

Caroline riding a tricyle for the first time

Caroline's physical therapist at school sent me this video of Caroline riding an adaptive/therapeutic trike for the first time. Her classmates cheered her on as she peddled by the playground. She really did have a lot of fun, but this video was taken near the end of her time on the trike (she was tired and ready for lunch).

Watching the video is a bit surreal to me. At first, it was bittersweet to see Caroline doing something I had never pictured in my mind. But Mike and I got a kick out of seeing her ride a trike like any other 3-year-old.

Wednesday, May 8, 2013

A video of Caroline laughing at my silly faces

When Caroline was diagnosed, we weren't sure what to expect. We didn't know if she'd be able to laugh or even smile. My biggest fear was that she wouldn't be able to express love.

Rett Syndrome has robbed Caroline of a lot of things. But she remains "Caroline." Full of love and full of energy.

I took this video of Caroline tonight.


Thursday, April 4, 2013

Separating Caroline from Rett Syndrome

Wishing for a cure.

It's hard to believe how conflicted I was about it for so long.

I think I so desperately needed to accept Rett Syndrome (and get on with our lives) that whenever I found myself wishing Caroline didn't have this disorder, in my mind, I felt like I was somehow rejecting her. I had such difficulty reconciling that Caroline had an identity outside Rett Syndrome. After all, Rett was here to stay. Nothing would ever change that.

Signing up for the Half Marathon to raise funds for Rett research forced me to confront those feelings. It forced me to think about who Caroline really is. She is sweet, she is smart, she is sparkly, she is feisty, she is demanding, and she is loving. Caroline is not defined by her disorder. Caroline is who she is despite Rett Syndrome. The most painful for me was finally accepting that Caroline's condition gets in the way of her ability to reach her fullest potential. It's so hard to admit that out loud. Writing that very sentence makes me feel like someone just punched me in the stomach.

I hope that researchers soon find ways to treat this disorder. I can now say that without fearing that my feelings imply I'm somehow rejecting Caroline. I simply wish for her to have a life without such profound challenges and struggles. She deserves better than this.


Tuesday, April 2, 2013

Caroline is spreading awareness with Cure Rett

We're proud to share that Caroline is part of the Cure Rett awareness campaign!


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 :-)