Thursday, February 28, 2013

13.1 miles for Caroline

On February 24th, my sister Min and I ran the Disney Princess Half Marathon with the Girl Power 2 Cure (GP2C) team. Team "Running for Caroline Lily" raised $11,430 for research that will help find treatments for Rett Syndrome. The entire GP2C team raise over $200,000. WOW!

Again, thank you for your interest in Caroline. Thank you for sponsoring us. Thank you for supporting us. And thank you for cheering for us during the race!

This past weekend was deeply emotional and physically challenging. It was also incredibly fulfilling.

(I'll have to write another post about Caroline's Disney World experience!)

Here are some highlights from the Half Marathon.

On our way to the Girl Power 2 Cure dinner 
Posing with a picture of our inspiration for the run
At the Expo to pick up our bibs
"Princess Marta"  
At the Expo.
Caroline was featured on the GP2C banner.
Race day.
Wake up call at 2:20am.
3:15am.
At the bus stop waiting for our ride to the race.
Team "Running for Caroline Lily" 
We walked a couple of miles to the start line
Arriving at our corral.
Amazing sight. 28,000 runners!
A few seconds from the start of our run. Lots of excitement and nervous energy!
A little "click and run" self-portrait. 
Popular Disney characters greeted us all along the run. How fun! 
It's really happening...we're really running a half marathon in...Disney World!
Running inside the Magic Kingdom!
 
I ran into my "other sister" Soojung and we ran miles 5-9 together.
She ran for her beautiful daughter Alice. 
Miles 9-10 were the hardest for me. 
I thought about Caroline a lot and held back tears. 
Approaching the finish line. 
What an unbelievable feeling. 
My post-run picture
We did it!
Proud to be part of the GP2C team
With two of my "other sisters" 
I can't think of a better reason to run

Thursday, February 21, 2013

Thank you so much

Dear friends and family,

I'm having trouble finding words to express my deep gratitude. I'm feeling very emotional as I write this, but I'll do my best to make sense and share some of what I'm feeling this morning. I want to thank you for so many things.

Every single day since Caroline's diagnosis, I've been moved by your kindness, your friendship, your support, your interest in Caroline, and your donations for Rett Syndrome research.

Thank you for letting me share Caroline's journey with you. Thank you for taking the time to read my Facebook status updates and this blog. Thank you for listening to me. I know you are busy. I know you have a thousand other things you could be reading or doing. And I am humbled. 

Thank you for sponsoring me and my sister for the half marathon this Sunday. Your donations will be used for research that will help alleviate Rett Syndrome symptoms that prevent Caroline from communicating, controlling her body, chewing and swallowing properly, breathing normally, sleeping, using her hands, standing without support, walking, and living to be my age. 

We are committed to giving Caroline a happy life. And your friendship and kindness have been a tremendous help. I love Caroline so much that it hurts my heart sometimes. She is the best thing that's ever happened to me. She has opened my eyes and heart to a level of compassion, kindness, patience, strength, and love that I did not know before. 

Please know that you have made a huge difference in my ability to get through these past two years since we found out Caroline was born with a condition that would drastically change her life and ours. I am incredibly grateful to have you in my life. Thank you for making my heart bigger and stronger.

Okay, I am writing through tears and need to pull myself together so that I can pack and prepare for the trip.

With much love and gratitude,
Marta

Tuesday, February 12, 2013

Caroline made a valentine for Mike

Caroline made a heart-shaped valentine for Mike during her speech therapy session this week.

Caroline used her eye gaze to direct the entire process. Using symbols (including "yes," "no," "go/next," "want," "something else," and "all done"), she chose the heart, the stickers, the markers, etc. She was given a wide range of options. And she was very specific about her choices. It was interesting to see how she gravitated towards certain colors like red and pink. It was also neat to see how she rejected some of the items including the dark markers and the rhinestones. When asked who should write her name, she immediately turned her head towards me. Caroline also got to decorate the heart using her own hands. The speech therapist held Caroline's left arm over the stickers while I restrained the right arm to interrupt the involuntary movements. Caroline was then able to attempt to place the stickers on the heart using slow "raking" motions with her hand. Her fingers barely touched the stickers, but she was enjoying the experience.

It can take Caroline up to 45 seconds to concentrate and focus her eye gaze on a symbol to communicate. It took her nearly 30 minutes to make the valentine pictured below.

When we got home, I explained to Caroline that it's nice to give valentines to people who are special to us. Using photographs of various people close to Caroline, I asked her to pick her valentine. She picked her daddy. She grinned when we gave Mike the heart she made for him. I am not a huge fan of holidays (one could perhaps call me a Grinch of some sort), but this interaction made my week.

Watching Caroline make her valentine highlighted something I need to work on. When playing with her, I often do it the wrong (lazy?) way. What I need to do is let Caroline decide if her dolls should eat or sleep instead of doing all the talking and making all the decisions for her. Selfishly, part of me just wants to hang out with her without thinking about incorporating some sort of therapy. Sadly, what I often see as "work" that gets in the way of our "normal interaction" is in reality the help Caroline needs to access a world that is otherwise out of her reach.

The Valentine Caroline made 
 

Saturday, February 9, 2013

Our house is not accessible

Caroline's latest check-up revealed that she's 34 lbs and a little over 3'2'' tall. She's in the 80th percentile for height and weight. For some perspective, I'm 5'3''.

Caroline has always been tall for her age (she gets her height from Mike!). She's especially tall for a Rett girl. We're relieved and thankful that Caroline's issues with chewing and swallowing have not affected her growth thus far. But we also worry about how we'll carry and lift her when she's older (and we are older). I guess we'll figure it out when we get there.

We do have to start thinking about some immediate concerns. We live in a three-level townhouse that is not at all accessible. Carrying Caroline up and down the stairs scares me each time I do it. She doesn't hold on to me and her body is either totally limp or really rigid, depending on how tired or excited she is. Her involuntary movements make this task all the more challenging for me (and the people who care for her including her nurse, my mother, and Mike's mom).

Our goal is to find a one-level home this year. The thought of moving seems so daunting right now. I love our home...but it's now very clear that we can't stay here.

Below are some pictures of our beautiful tall girl and our scary stairs


Sunday, February 3, 2013

We took Caroline to a Yo Gabba Gabba concert!

Like most kids her age, Caroline has favorite shows and music. Right now, she's all about Yo Gabba Gabba. We've introduced her to various movies and songs, but nothing lifts her spirits (or grabs her attention!) like YGG.

We took Caroline to see Yo Gabba Gabba Live this weekend. The look on her face was priceless. When the show began, she looked at us like "wait a minute, what's going on here?" She was just so tickled! Mike and I couldn't stop looking at her face. She enjoyed the entire show. She was so focused. Her body was even relaxed and free from her regular involuntary movements.

Hearing Caroline laugh whenever she really enjoys something fills me up with happiness and hope. Sweet moments, however, can also carry some level of sorrow. I often find myself desperately wanting to hear what she's really thinking. So I end up asking her questions she can't answer. "What's so funny, Caroline?" "Why does Plex make you laugh so much?" "What's your favorite song?" She often looks up at me and vocalizes with great enthusiasm. I respond with "oh, really?" or "yeah? that's awesome!" And I feel awkward and guilty about it. But I don't want to not ask her questions anymore. I don't want to stop talking to her like she's a typical kid. I fear she will soon realize that I am faking understanding what she's trying to say. I can only find hope in the possibility that she will one day communicate autonomously. Yes and No can only take you so far. And so I try my best to just enjoy the moment and live in the present. (or maybe just ignore what is too difficult to face?)

We sang along to all the songs! haha! (Caroline loves it when we sing "her" songs)

This is Caroline's reaction when the characters appeared on stage. Priceless. 

She brought along Muno and Brobee to the concert. She has all five characters, but I explained to her that she could only bring two along. She used her yes/no cards to pick them out. 

Dancing with daddy's help. 

Caroline LOVED the show!

Intermission


We got accessible seating for Caroline. She had a great view of the show. 

Caroline wore her Yo Gabba Gabba Vans shoes.  She smiles whenever she sees them. 
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