Thursday, December 31, 2009

Reading Still On But The Roads Are Icy

No crisises (crises? crisi?) through the night. Nothing to report except the poor driving directions.

If you're coming to read to Charlotte today, please drive extra cautiously. There are reports of accidents, road closings, icy conditions, etc...

That is all.

Tuesday, December 29, 2009

Charlotte is still here, sort of.

She's reacting less and less to questions and her breathing goes through these periods of slowdown and then it comes back up. I'm sure this will increase.

Nurse Cathy checked her out today. She said CJ's heart rate is slowing and her body is to the point where it won't take any food/water and wouldn't know what to do with it if it had some. Her blood pressure is very good which means she's in no distress or pain. Cathy confirmed for us that Charlotte would probably pass within the next few days. There will be noticable additions to the website when that happens so that everyone will know without having to read the blog because who knows what shape we'll be in?

Charlotte and I have a certain way of holding hands that I think she got from watching the movie, Wall-E. The concept of holding hands and interlocking fingers became a major theme and Charlotte developed this way of wanting to hold hands with me. I'll assume she did that with others but I'm not sure. Yesterday, she initiated that with me which made my day.

I quite possibly heard her last words the other day as well. I may have already mentioned this but at one point, she actually opened her eyes and said, "Daddy?" (preparing to tell me a plot point from one of her books or videos the way she had done so many times in the last few months)

Just about falling off the chair, I sputtered out something like, "Yes dear?" or "yeah, Baby?" or "Charlotte?" or something like that. I was pretty flustered by hearing her little voice which was raspy from dryness and lack of use.

"Marianna (I think) put on her crown and ..." didn't understand the rest. I asked her to say it again but the moment was gone. Haven't heard her speak since then except to grunt "Mm Hmm" (yes) once when we asked her if she wanted some chocolate milk.

The reading vigil continues and it's become so much more than I ever imagined. I came up with the concept to have voices filling Charlotte's last few days with stories because books/words are her favorite thing in the world. Since she couldn't manipulate the books very well anymore and I knew we weren't going to be able to read to her all day so I figured we'd get other people to help.

What has happened is people from all over, some we've never met before, have come in/Skyped in at all hours of the day and night. Some of you have brought your children and have used the opportunity as a very healthy way to introduce them to the concept of death. Some of you have sent in recordings or videos of yourselves reading stories and the energy of this house has remained. The only thing missing is a Skype from Holland. (Let us know when you're available Karin. Needs to be soon.)

The food, which has become healthier (mostly), keeps coming in and the wine bottles have been multiplying. Rachel and I are determined to bring our physical selves (fat tubs of goo) back up to the level of our spiritual selves (growing ever more peaceful).

I helped with Winter Camp at Romp n' Roll this morning which was great. It was a total parade of cuteness and it was so nice to feel the warmth of the kids when they saw me. Next week we start back big time and I think I'll be taking over some of Rachel's classes for a little while. I think Samantha, Annette, and Emily (who have taken over the lion's share of work at Romp n' Roll) can't give up the responsibility and extra hours fast enough!

Speaking of Emily, she's gone and done a very cool thing. She is a student at Randolph-Macon College in the Drama Dept. and is directing the upcoming production of Alice In Wonderland. She has coordinated with Prof. Joe Mattys to donate all ticket sales to Charlotte's fund!

So go see it! :-) It runs March 17-20, 2010 at the Black Box Theater on R-MC's campus. Tickets are $5. Can't beat it with a stick! I'm thinking we might pick one of those nights to be CJSTUF Night Out At The Black Box. We'll let you know. Call(804) 752-7316 to reserve your tickets. It's a small venue and large crowds are expected every night.

Here's another thing coming up for runners/walkers. For anyone who wants to use the races for fund raising, we will have registrations available for the Ukrop's (What are they going to call it next year?) Monument Ave 10K in March and then more for the Suntrust Richmond Marathon, McDonald's Half Marathon, and HCAVA 8K in November. All those interested in participating who raise $500 or more in pledges will receive their 10K registration free. Not sure what the limit will be for the Nov races.

For the 10K, we will have pledge forms available very soon or you can make your own. Make sure all checks are made out to Charlotte or CJSTUF. For the November races, we hope to be a little more technically advanced. We're working on our own race accesories and everything.

Please let me know if you're interested in participating and what race(s) you want to be in. I'll be doing the 10K, the Richmond Marathon, and probably a few other races during the year. I even want to try the very questionable act of running the Chicago Marathon in October as well.

That's all for now.

Monday, December 28, 2009

Ok, Ok, we get it!

So apparently if you go more than 48 hours between posts people start to panic a bit. In the last hour or so we have been getting a trickling of emails and phone calls saying, "Is everything ok?"

Yeah, it's ok.

As ok as it gets at this point.

First of all, I want to thank everyone for the support and kind thoughts following my Christmas post. I appreciate being able to express myself honestly and I appreciate all the support that we are feeling. I have said it before but it bears repeating: we feel strong through this because we know that we have a very soft cushion on which to fall and that cushion is YOU...our support network.

The Butterflyaway event at Romp n' Roll yesterday was small but successful. We will repeat it on January 2nd. I would like to repeat that this event is for anyone (families, friends, adults, kids) that has questions about dealing with death of a child, grief, and any other aspects revolving around Charlotte's passing. I believe that the January 2nd event is planned for 5 PM. Be there or be square!

We continue to have a slow and steady stream of readers. The days stay busy from between 6 AM (or so) until 8 or 9 at night (sometimes later). I asked Charlotte today if she enjoys the readings and she nodded her head yes.

Yesterday, the nurse came to change her dressing and reset the morphine pump. We noticed yesterday that she was having difficulty swallowing again and that her throat muscles seem tighter. We have also noticed a marked decrase in her muscle tone all over her body. The doctor recommended increasing the Atavan slightly but otherwise not much has changed. I think that in the last 24 hours, we have seen a slow but steady decline in her status. She is sleeping a lot. It's difficult to tell since she keeps her eyes closed a lot but I would say that she has only been truly awake for a few hours today. Lots of snoring noted. She also seems to feel more comfortable now in a more prone (rather than upright) position. This is all to be expected so neither Roger nor I are surprised. We are ready and we want this to happen as it will. Who knows....she could live another week or she could pass tomorrow. It's so hard to determine.

Dr. Archuleta is coming to visit again on Wednesday so we will see what his assessment is then. We have also called the acupuncturist to see if there is anything that she can do, even if it is just to make her a bit more comfortable. She is coming back tomorrow afternoon.

I have to relate another story that goes along with the "sometimes people just don't get it" theme. Roger went to the doctor this morning. No big deal. He was just due for a check up on his blood levels (cholesterol, etc.). While the nurse/tech was taking his blood, she was asking all kinds of questions like, "so how was your Christmas?", etc. Roger was trying to be polite and slightly vague but he was wearing his Bald Chicks Rock tee with Charlotte's picture and the lady still just wasn't getting it. Finally he said, "well, she has cancer so it hasn't really been the best Christmas." I still think she didn't get it. It's amazing how even some people in "healthcare" can be so clueless sometimes. In my opinion, he was far too polite.

Anyway, Roger and I have been having a Harry Potter marathon going for the past few days, watching all the old movies. Always a favorite for us so that has been enjoyable. We also used some gift cards to get some fun stuff at Barnes and Noble, including Who Framed Roger Rabbit. One of Roger's FAVORITE movies of all time.

So I guess that's it. I promise we will try not to keep everyone in the dark for more than 48 hours at a stretch...on to 2010. That's all I have to say.

Friday, December 25, 2009

The Best Christmas

It was a really wonderful Christmas, full of traditions and joy. On Christmas Eve, we all got ready for church and made our way to the service. Charlotte was dressed in her most adorable outfit (as usual). We even opened a few presents before church. Roger and I are horrible about waiting. After church, we came home to what has become our "traditional meal" of pizza and wine. A nice, low-key, easy (and yummy) way to celebrate the day. Once we had all eaten, it was time to open presents. The family presents were opened one after another and we marveled at ALL the stuff for Charlotte. There were, as usual, about twice as many presents for Charlotte as there were for Roger and myself combined. Tis the reason for the season, eh? It's all about the kids.

Once all the family presents were opened, it was time to settle into bed. Charlotte got to sleep easily so Santa could do his job. When the morning dawned bright and early, we took Charlotte into the living room to see what Santa had left. We were excited to share in her glee as she opened the "pony phone" that she had been requesting for the last four months!

Yes, it was a wonderful Christmas.

Last year. 2008.

So much has changed since then. At that time, we were oblivious to all of this. Unaware of the year that lay ahead. Unaware of the monstrous tumor that was already a substantial size and growing in her brain. Charlotte was a "normal" kid. Singing, dancing, working on being potty-trained, playing with friends, already beginning to read. She was doing all the things that preschoolers do. For us, cancer was something that happened to other people. Other families. Cancer was the thing that we fought through walk-a-thons and annual donations to St. Judes. We didn't know we would very soon have to go nine rounds in the ring with Cancer...only to be knocked down over and over throughout the year.

This Christmas, on the other hand, has been pretty sucky. (To put it bluntly.) Despite everything that our network and friends have done for us (and there have been wonderful things coming our way for which we are MOST appreciative), it is still just a difficult holiday.

It's challenging to be joyful.

We did not engage in many of our regular traditions: the annual Christmas letter did not go out (but you do get daily blog posts...how GREEN of us!); we did not participate in the regular gift exchange to family and friends (although we have been the recipient of some very healthy and very yummy food and wine); we did not attend Christmas Eve service although we did Skype into the service at my home church in Daytona Beach where Aunt Jamie was singing (beautifully, as usual).

I realized something last night as I was finishing Charlotte's late evening medications and preparing to fall asleep on the trundle bed next to her: in many ways, she is already gone. She may be breathing and eating and even responsive to our stories and queries, but the Charlotte that we knew and loved...her personality and her spirit and her voice are all but gone. She cannot walk. She can barely talk. She cannot interact with us as she could even two weeks ago.

Even the most innocuous things will make me sad. I was watching a Rice Krispies commercial where the mom and two kids are decorating rice krispy treats for the holidays. The girl in the commercial is around four. She is talking and decorating and participating in the activity. And I think: Charlotte will NEVER do that again. She couldn't do it now if she tried. These are the things that make me sad.

I went to work yesterday and it was a mixed experience. It was nice to see some of our regular customers and I was able to use the time to get caught up on some very important RNR work. It also gave me an opportunity to get out of the house. All good things. Then, you get the random person who comes in who knows about Charlotte's situation but has not kept up with the blog posts and perhaps has not seen us in a few weeks or months. They say things like, "So is Charlotte excited about Santa?" or "So how's that pretty little girl of yours doing?". They obviously don't know. And how do you tell them? Do you ruin their Christmas? Do you say, "Well, she's in the final stages of her life right now and we don't really know how many days we have left with her. She is completely bedridden and hooked up to medications constantly and she's going to die. Other than that, we can't complain."

Yeah, there's no right answer to those questions. You just kind of smile, nod your head, say something obscure like, "She's ok" and move on. But it's comments like that which will smack you back into reality and make your heart ache.

I am ready for this year to end. More importantly, I am ready for Charlotte's life to end. I will miss her when she is gone. She will leave a huge hole in our lives and in my heart. But her life as we knew it is already over and this has been the most difficult year of MY life. I hope this post doesn't ruin everyone else's Christmas. As usual, I am seizing the opportunity to be brutally honest.

Before I close, I will just piggyback on Roger's previous post about the Butterflyaway event on December 27th (and probably again on January 2nd). I think this will be a great opportunity for parents to help their kids understand what is happening (and what will happen) to Charlotte. We hope that as many people who want to attend can make it. If you cannot make it and still have questions about how to handle this with your kids, please let us know individually. We have a lot of resources through Noah's Children and ASK that can be of service. Also, if you as a parent want to attend without your kids just so you can ask your own questions or figure out how to share this information on your own, that is ok too.

A Blessed Christmas and a Peaceful New Year to one and all.

Thursday, December 24, 2009

Butterflyaway

To all our local network:

Kathy Lesher, the social worker from Noah's Children, suggested we have an event for children before Charlotte's passing as a way for them to prepare for it and to say goodbye. There will probably be more than one and the first will be this Sunday, December 27th at 2pm. For want of a better title, I'm calling it, "Butterflyaway" and it will be short and simple. We'll read the Very Hungry Caterpillar, do some butterfly arts and crafts in the art room, and then the kids can play in the gym for a while.

Charlotte will not be there which means either Rachel or I will not be there but the other one of us will be.

Kathy will also be available to answer anyone's questions. She might also enlist the aid of an organization called Full Circle Grief Center.

This event is free and open to absolutely everyone. Please email me if you plan to attend. We will open the 4:00pm slot as well if there is signifigant interest. A third possible event could be Sat, Jan 2 at 5:00pm.

This is extremely short notice, I know, so I'm hoping I could talk everyone into spreading the word.

CJ is resting comfortably. There have been many, many wonderful readers through the house and she has been awake about half the time. We've moved her Dexamethosone back up to 3ml from 2ml to see if that will help her swallowing difficulties.

There is an accupressurist/accupuncturist coming over tomorrow who has been recommended by Dr. Anna. Her name is Elizabeth and she told me that she has worked with a patient with swallowing troubles before and has had significant but temporary success improving the patient's ability to get food down. Temporary is all we need.

As I type this, I realize this is the anniversary of my Grandpa Homer's death (Dec 23-This will probably post after midnight). This kind of stuff puts quite the surreal tint to the holidays, doesn't it Gramses?

Monday, December 21, 2009

Quite the day of reading...

It's no wonder that Charlotte is sleeping. Snoring actually. We had readers at the house at 6 AM this morning and aside from a few minutes break here and there, we had almost constant readers until almost 8:45 tonight! I can't begin to tell you what a wonderful energy it creates in the house. I love it! And thanks to all those who are bringing us healthy snacks (or wine).

Nothing new to report on the medical front for her. She continues to be awake for a few hours at a time and then sleep for a few hours. The meds have remained fairly constant. She doesn't talk much (every once in a while a word slips out) but she usually responds to yes/no questions and sometimes waves. Every once in a while her eyes open as well.

I actually went to work at romp n' roll this morning. I helped Emily with winter camp and it was great. Emily actually ran camp and I just helped on the front desk and was the "trusty assistant". It was so much fun to play tickle monster with the kids. They were a great group and I think it was a good return.

I also got to meet with Matt today. He was nice enough to come over to my neck of the woods and we had a good chat.

We did have to say goodbye to Aunt B today. She was very helpful during her stay here and I know she enjoyed her time with Charlotte. We will miss her a lot! (We always do.)

If you haven't been on our website lately, you should check out the photo page. It's Charlotte-palooza! We have slide shows from many of our recent adventures posted there. For many of our friends who do not have access to Facebook, this is your chance to catch up!

Many have asked if we have plans for the Christmas holiday and we don't. We just plan to stay home and "lay low". Visitors and readers (especially Skype-ers) are welcome. Just let us know.

By the way, the house is FULL of food (and I'm happy to say most of it is healthy). The fridge is FULL to capacity and the freezer has some good stuff in it too. Just want to make sure everyone knows we are grateful and we are being well-cared for.

Have a great evening, everyone.

Sunday, December 20, 2009

Snow and Sun


The sun is out but the world here in Ashland is still a blanket of white. Reports vary, but I am thinking we got somewhere around 15 inches when it was all over! One of the best pics we have is our hammock...check it out...


We had asked our Facebook Fans to post pictures of Frosties made in honor of CJ and they went to work yesterday. Click HERE for the highlights (so far). I love the variety and some of the many "girly" snow-people. If you're not on Facebook but want to make a Frosty for CJ, just email it to me at rachel@cjstuf.org and I will post it for you. Eventually I'll get them onto my picasa site which will eventually be on the CJSTUF website. All a work in progress.
The Glass family came over and built a snowman just for CJ in front of her window. He's rather rotund so we call him Frosty the Hutt! They did a great job. You can find him in those Frosty pics in the link above.
While a few readers had to cancel/delay their appointments yesterday, we still had a steady stream of visitors over the day. Some of our neighbors stopped by. We got Aunt Lynne and Uncle Vance skype-ing in from Denver. They read to Charlotte last night and Aunt Lynne is reading to her again as we speak. We have a pretty full docket again today and I think most everyone is going to make it.
Charlotte was up off and on throughout the day. When she was awake, she was drinking chocolate milk (very slowly), responding to questions, and even gave Roger a hug at one point. The nurse came by to hook up the morphine pump and she has been calm and peaceful the whole time. No pain flareups so that is good. We have continued to administer the other meds every 4-8 hours.
I will reiterate the positive vibe that we are getting from these visits. The house is comfortable, calm, and cozy and I think a lot of that is the regular visits from others. It keeps us from getting too mope-y and gives us good distraction. Plus, Charlotte can probably only stand so much from her parents...she needs variety! I am so glad that we can keep her at home. It makes all the difference in the world.
Forgot to mention this from the other day: we had a special delivery from MCV via Melissa O. (a music therapist who works at MCV and also a good friend). When CJ was in the hospital, Heather (from Child Life) would always bring these plastic Care Bears in to visit Charlotte. They were for her to borrow, not keep. As Heather pointed out, kids who are in and out of the hospital are frequently given much but it's so good for them to learn that not everything that comes to them is for them to keep. They sometimes have to share. Anyway, the Care Bears became a constant ritual and Heather would always make sure the bears were in CJ's room any time we were hospitalized. Sometimes they were even waiting in our room before we got there! Another favorite she and CJ shared was the Wonder Pets so sometimes Heather's Wonder Pets snowglobe would come to visit as well. Long story short, Melissa brought the purple Care Bear and the Wonder Pets snowglobe on Friday for CJ to "borrow".
I took the first shift last night and slept on the trundle bed next to hers for a few hours. After the 3 AM meds, Roger and I switched. We actually have a birthday party at RNR today so he will be heading in to work later this afternoon.
At the moment, we have another angel who stopped by with his backhoe to plow our driveway and Kolbey's driveway. Amazing!
Hope everyone is enjoying their weekend, whether you are somewhere snowy or not. It is still difficult for me to believe that the holiday season is upon us but every once in a while I realize that Christmas is this week.
More later...R.

Saturday, December 19, 2009

Snow!!!













The snow just kept coming down last night! I am not sure about exact levels but I have not seen snow like this fall in a one-day period in the Richmond area in a LONG time. We will surely set some records here.

It is almost 9 AM and it's still snowing! It's been going pretty steadily since 5 PM.

Those of you who live in the Richmond area know that while snows like this can happen, they are rare and far between. When we do get snow like this, it is typically in January or February, not December. Here's where I am going with this: this snow is a gift for Charlotte! I am sure it will be her last snowfall and while she won't be getting out and playing in it, she can see it from her window. Is it also a coincidence that Frosty the Snowman was on TV last night? I think not! I have asked everyone on the CJSTUF facebook page to build a snowman for CJ today (if you live where there is snow). You can upload a "fan picture" on the Facebook page as well so we can see your creations.

It's the little gifts.

Charlotte woke up about 11 PM last night as I was giving her meds and she drank a good bit of chocolate milk again. She's been drinking and stirring off and on all evening. I went to sleep about midnight but Roger was up with her and did her 3 AM meds. I woke up to find that two police cars were in our cul de sac (called out to one of the houses for some reason). With all the snow, they actually got stuck! Roger went out at one point and tried to help dig them out. A snowplow came through (which I am sure was a result of the policemen calling them out. There is no way they would come to our street at this point.) but it didn't seem to help. Anyway, at some point, the cops got everything fixed and were able to leave. THAT's how crazy this snow is!

I stayed up with her after 3 and got some sleep on the trundle bed next to hers. I put the Spa Radio channel from Pandora (on my iphone) on and the music was so relaxing. We were both snoozing.
We had some good mother/daughter moments around 7 this morning as I gave her next dose of meds. We have the morphine pump but I told our nurse to take her time getting out here today. I know the weather has made things nasty and we are doing ok.

A few folks did sign up for early morning reading but the weather has canned that as well. All is good! If you have signed up for any time this weekend and cannot make it due to weather, please just come when you can. You may call or email us ahead of time if you want to check. We completely understand. On the other hand, if you live in the neighborhood and want to venture out, come on down to Slash Court! We'll have a coffee/cocoa party!
She has been drinking the chocolate milk off and on and I actually stepped away from posting this for a bit because she has started talking pretty well. She is fairly alert and saying little things to us, answering questions and smiling. She is comfortable. That is good!
I had posted yesterday that we found a group of people (three separate people, actually) step up to help the family in Denver. Well, I received a great email last night from my high school friend Cara in Florida about this and I had to share. Her email text follows:


Just wanted to share six degrees of CJ that gave me chills today.

My good friend Katie lost her mom to lung cancer on December 22nd last year, so we've been talking some lately about doing something to honor her mom in some way, and Katie really wanted to find someone struggling through a similar situation that she could help in her mom's name. Of course Charlotte came up when we were discussing all this. Remembering that Katie and her family lived in Denver for years, I mentioned the family that you had "shouted out" for thinking Katie might know someone up there who could help out.

Today was a half day at my boys' school, so we met Katie and her 3 kiddoes at the mall for lunch and a Santa visit. Katie told me about her best friend from Denver, who is a mom of twins and who's "Moms of Multiples" group had money to give burning a hole in their pockets. Katie GLOWED when she was saying how her friend jumped onto the opportunity to help the family you know from Houston. What are the chances that these things happen? (This, to me, is how God works).

So a mom from Richmond who grew up in Port Orange travels to Houston for treatment for her little girl, and meets a family from Denver in desperate need. A high school friend of the Richmond mom has a friend raising her kids in Port Orange but who lived in Denver for years. This friend lost her mom last Christmas to lung cancer, and was searching for a way to pay it forward and honor her mom. So she calls her Denver best friend and hooks her up with the Denver mom thanks to the Richmond mom's thoughtfulness and caring in her OWN time of desperate need.

Thanks to Charlotte. And you.


Did you follow all that? This is what we want CJSTUF to be about. This is "where it's at". I am constantly amazed at the way the Holy Spirit works within our lives and within our communities to help us help each other. Complete strangers have been drawn together from all over the country and all over the world. Now they are not just helping us but reaching out to help others. Charlotte is the catalyst but YOU are the engines. The Holy Spirit is the fuel to keep that oil burning! And it never runs dry!

There's your Guideposts spiritual moment for the day. If you are somewhere there is snow, stay home if you can and be safe if you must go out. If you are somewhere sunny and warm (or at least sunny), enjoy the day and think Frosty the Snowman thoughts!

HUGS,
Rachel

Friday, December 18, 2009

As Good as it Gets

Today has been an ok day (so far). She slept pretty much through the night and only roused at about 6 AM. I administered her needed meds. At first, she was not able to open her mouth to talk or eat but after the medications got into her, she actually took a sip of chocolate milk and then proceeded to drink a full 8 oz (a rompy cup) full. She talked to Roger a little bit too. The day has consisted of:

Visits from friends, schoolmates, and Noah's Children staff to read, sing, and talk to her (and us).

Administration of medications (all timing related so lots of tracking involved)

Awaiting the snow and now watching it fall. It is coming down pretty well right now and anyone in the Richmond area (or those keeping an eye on the Weather Channel) know that we are headed for some good snow. I guess it's a good thing that everyone bought out the grocery chains and filled up their gas tanks.

She has been sleeping, dozing, sometimes slightly awake, and even occasionally responsive to questions with head nods and appropriate waves, etc. Sometimes she is even snoring. She hasn't eaten anything since this morning but she genuinely seems comfortable and content. That makes me happy.

The visits have all been wonderful and I was really amused when one of her preschool friends said, "Her hair grew back!" and another one said, "And her face got a lot bigger!" I love the innocence of children. I think they had a good visit. At the same time, I think Roger had almost as much fun entertaining the kids who visited. It's good therapy all around.

They will be delivering a pump for the morphine tonight and we will get it started tomorrow. This will hopefully even out her morphine dose while allowing us to "push" some extra if she seems in distress. It's hard to say where things will go from here (there are multiple possibilities) but I doubt she will be alert on a regular basis from this point forward.

I have VERY good news on the Denver front: I have had THREE people contact me about helping with our family in need that lives in Golden. I have sent out an email to everyone, putting all in touch with one another, so hopefully the ball is ROLLING. Be on the lookout. We may use this blog or our website as a vehicle to help with PR or networking as we help this family. Thank you to those of you who have agreed to help. Lara Lombardo, a friend of Roger's from high school (Denver North!), helped to organize a bake sale in Denver recently for CJ and they raised a little over $400. We have asked them to pass these funds directly on to the family in Denver in CJ's honor. Thanks to any of you who participated in that. The CJSTUF network is working already! THIS is what it's all about!! (No, Roger, it's NOT the Hokey Pokey!!)

OK, I understand dinner is on its way so I plan to go watch the snow, enjoy my daughter, enjoy a meal, and stay safe and cozy indoors. Y'all do the same!

Rachel

Mama's Perspective

Roger did a really great job of capturing the events of the day but, of course, I have to add my two cents. It helps that it's after 2 AM and I'm just not ready to sleep. I'm kinda sleepy but I just have a bundle of nervous energy.

Fortunately, Charlotte and Roger are sleeping for me. As Roger mentioned, the latest IV doses of the meds (at 8:30) really relaxed her and put her "out". In fact, she was so relaxed at 12:30, I didn't give her another dose of the morphine or atavan. She's still snoozing and I go in to check on her every once in a while. I actually just changed a very wet diaper which is a good thing, I guess. The child hasn't eaten anything in over 30 hours!

I can't get over the perfect timing of everything. Our trip to Florida was so perfectly orchestrated. She was active, engaged, and enjoying herself up until the end! If our trip had been extended by even a few days, we would be in a totally different situation. Who knows...maybe she just was ready to let this happen to her now that the trip was over. The change in her since last Saturday is unbelievable. The old cocoon analogy is very apt. Her body is closing in on her and she is shutting down. I have never experienced this before (with a family member or a friend) and it is bizarre and fascinating.

I want to express how fabulous the Noah's Children staff have been. They are so matter of fact about the process but at the same time they are full of compassion and caring. I appreciate both. It must be an incredibly difficult job to deal with this on a daily basis and they handle it with such empathy, ease, and kindness. We are extremely grateful.

Seriously planning her memorial service today felt both good (that's the organizer and planner in me) and incredibly surreal (I am planning my daughter's memorial service!!!). At the same time, it was not nearly as SAD as I had anticipated. Further proof that I am ready in many ways for this next step. There is an emotional part of me that keeps losing it at every turn but there is a strong part of me that is ready to let her fly away. When the time comes, we will celebrate her life.

I have no idea how the reading vigil will proceed at this point. There is a very good chance that if you come to read or sing, CJ will be asleep. Remember that is OK. As Roger mentioned, the steady stream of visitors is a good thing. Looks like Richmond will be getting some winter weather in the next 48 hours so if you have signed up to read and find that you can't leave your house, please know that we will understand.

Finally, I want to send out another request from our Denver Network for a point person to help a very special family in the Denver area. I need a liaison who can work with this family (mom, dad, and twins who are 5). The one girl has recurrent Leukemia and the family is in need of fundraising help/donations, meals, and assistance with childcare (among other things). In the spirit of CJSTUF, let's find a way to get all those Denver folks who went to high school with Roger (or other friends/family in the area) to help a family in need that is just like us! If you can help, please email me at rachel@cjstuf.org You will not need to do all of the work but I want to have one person who can work with the family, determine their greatest needs, and then contact others in the Denver area (via this blog or other means) to help them the best way possible.

Thanks for your love and support.
Rachel
The Final Leg Of This Part Of The Journey

Looks like we're headed down the home stretch. Charlotte is still mostly alert and can give us head nods and point to fingers but little parts of her central nervous system are shutting down. She can't open her mouth right now (we're working on that) and she’s not swallowing so we might get an IV pump just to get her liquids and nutrients. The latest protocol of drugs, including morphine, has actually helped a bit.

She slept on our laps all night last night (Rachel and I took turns) and I think it was the best night of sleep we've all had in a long time.

It's very important for everyone to know that most of the time, she's in no pain. We often ask her if she’s hurting anywhere and usually it’s no. She's just hungry and thirsty and occasionally uncomfortable/itchy (from the morphine) but not in pain. The Noah’s Children hospice nurse is downstairs now checking on her.

It's also important for everyone to know that as we get closer to the end, I think I'm doing better with things. I've already accepted a lot of it but didn't want to totally let go and I have been having a rather hard time with things the last week or so. I still follow a bunch of Caringbridge sites and the usual progression of things in the terminal stories is that once the morphine is introduced, the end is not far away. So, understandably, I've been kind of dreading that part of it. Dr. Archuleta, the primary hospice doctor, prescribed morphine Tuesday night and I went to pick it up yesterday. It was a tough, lonely drive home after that and I felt myself almost breaking down more than once. But as I got closer to home, things seem to lighten up. Not sure why but I was at least functional when I got there.

I prepared the latest doses of everything, including the morphine, and without a lot of fanfare, I gave her the first dose. I was determined to be the one to do it and I was remarkably calm about it. I think I finally (almost) let go. Her reaction to everything was great. She became chatty and the readers who came by kept her engaged all afternoon.

She started fading around 6pm and by the time Miss Christy came by with a tasty bottle of wine, some good books, and The Sound Music video, she was pretty out of it. We also really first noticed that she couldn’t open her mouth right about then.

I’ve been using the voice memo app on my iPhone to record little snippits of CJ saying a few choice statements like “I love you Granny.” Looks like that was a good idea Aunt Jamie Jamie Tamm Tamm.

As I was holding her throughout the early morning hours, I would wake up and check on her breathing, fully expecting her to not be. I wasn’t scared. I wasn’t sad. I felt very matter-of-fact about the prospect that I might be holding CJ’s empty cocoon. When everything is right in front of me, I do and feel my best. I have the most trouble when I’m not around it and my mind wanders. I’m pretty good at dealing with the situation at hand but not the “What-ifs.” Pretty soon, I won’t have any more “what-ifs” to worry about and that’s mostly a good thing.

There are still so many positives and little bonuses here and there. This morning, CJ was still sitting on my lap and we were watching “Superwhy” on PBS. The Alpha-Pig has an alphabet song that ends with a “big thumbs up!” and CJ was right there with hers! She likes the show and obviously knew what was coming. I don’t remember ever noticing that before so it was a very cool moment.

Karen Giles came by this morning to read and the last book she pulled out was The Very Hungry Caterpillar by Eric Carle. It’s always been a favorite of ours and has taken on new meaning recently. Thanks Karen (and her husband!). Her daughter, who is a long, long, LOOOOOONG time member of Romp n’ Roll, drew a snowman picture for Charlotte and CJ liked it so much, she wanted to hold it. We ended up taping it to a chair so she can see it.

Since the start of this post, the entire hospice team has been by except Dr. Archuleta and he’s slated to be here any minute now. We spoke to Nurse Cathy about drug options and where we might place the oxygen pump that was delivered last night. With social worker (?) Cathy, we covered some of the proper things to do following CJ’s passing and had a chance to do some actual planning out loud which was very helpful. We even spoke at length about the memorial service. Rachel made a list. That’s a good sign.

We had to give CJ another dose of morphine and she was not happy about it. Since she isn’t swallowing, it only takes a few minutes for it to come dribbling back out but it absorbs quickly under the tongue so it’s still effective. Uncle Kolbey made faces at her to cheer her up.


LATER…

Wow! It’s now 11:00pm and what a night we’ve had! First off, Dr. Archuleta came and checked out CJ. He had to see in her mouth to make sure there wasn’t some kind of infection or sores keeping her from opening her mouth but she wasn’t very cooperative so I got the wonderful job of holding her head while he stuck a tongue depressor in there to pry it open. No one was happy about it. Once it got in there, though, it really wasn’t that big a deal and she was ok. But I wasn’t. Just having to force her to do one more thing she vehemently didn’t want do was a little too much for me and moments after Dr. Archuleta was through, I pretty much lost it in front of everyone. Good thing Rachel and Aunt B were there.

How wacked is this? I wake up in the middle of the night fully expecting and ready to be holding CJ’s lifeless body and I’m OK with it yet when I participate in a necessary procedure that ends up not being all that big a deal, I’m a mess. Man! My brain candle is dripping wax.

Well…Dr. Archuleta prescribed intravenous versions of all the oral drugs we had been trying to give her and some new stuff and finally, during the evening, Patty, a Noah’s Children nurse (quite the character, I must say) came by and gave us a tutorial on the protocol. The most complicated part is the mixing of the Atavan. No problem, though. We’ve got it! CJ is all about her central line. You could put motor oil through her Hickman and she’d be fine with it.

Still no open mouth yet. Which means no eating or drinking. She won’t even take a wet washcloth. Dr. Archuleta mentioned the new drugs might relax her mouth/neck muscles enough to have a brief reprieve, which would allow us to try some very soft food for her. He also (sort of) urged against IV fluids and nutrients if we can’t get any real food into her as it would probably make things worse (as in more painful which Rachel and I are not going to allow). We’ve actually heard this before so it didn’t surprise us.

SO…(heavy sigh)

If she doesn’t open her mouth, she won’t take in any fluids. If she doesn’t take in any fluids, she’ll become dehydrated in a couple days, her kidneys will begin to shut down and she will be gone before Christmas. If she opens her mouth and somehow has the ability to swallow, she’ll linger a while longer. There will be no feeding tube or IV fluids. Forcing her to stay longer simply because we don’t want her to go would be inhumane, unfair, selfish, and unkind.

Pastor Ed from St. James The Less came by as well tonight and we discussed the memorial service and what we might like to have/do. As I’ve mentioned before, I’m not one for officially organized religion but Pastor Ed makes me think which is why I like him. I also like to pick his brain about all kind of things, not just spiritual matters. We also love St. James The Less because of everyone's commitment to each other. It's the very definition of "community" and "fellowship" and we love everyone there.

We’re pretty sure there will be a large number of people wanting to come and celebrate CJ’s life and the energy she put out into the world so we’re thinking it will be held at a larger venue than SJTL. Blackwell Auditorium at Randolph-Macon College Campus comes to mind as a possibility if we can get it. It will be a kid-friendly service and there will be lots of music. I will be contacting people to see if they’d be interested in playing so keep your ears peeled. The final song has to be a big group-sing of Frosty The Snowman.

Not long after Ed left, Critical Care came by with new supplies reflecting the new protocol and not long after, nurse Patty showed up with the drugs.

After I administered her first dose of IV drugs, it was like she finally let go and zonked out. I put her in her downstairs bed and at last check she was sleeping very peacefully.

That doesn’t mean nothing was going on. In fact, with the introduction of the IV drugs, a positive change seemed to come over the house. I’m not just saying that. Most everyone here tonight felt it.

Tonight, the house became a hub of activity, buzzing with positive energy and bringing the mood up out of the pits.

Jay Campbell, CJSTUF.org’s webmaster and IT guru, was here helping us fix stuff on the website.

Our neighbors, Bob and Jamie Flanagan came by to visit bringing the newest member of their family, Caleb, to the “show.” Their son Larson is one of Charlotte’s oldest friends. He and Wyatt are the two boyfriends.

Dr. Anna Madland (chiropractor extraordinaire) dropped by with her table to give Rachel, CJ and me adjustments. It was very nice! She also got a bite to eat.

Beth (our Disney World paparazzi), Sean, and little Dylan Harris came by to read/sing to CJ. Sean even brought his guitar and quietly played/sang to CJ as she slept. It was so touching. He’s even written a song about all this. Beautiful!

At one point, almost all of these things were going on at the same time creating a very positive vibe. Noisy too! Even nurse Patty commented on it. It’s how a passing should feel. It’s how I want the memorial service to feel. The tears are still coming here and there and Seth’s song had us all crying but that’s ok. It felt healthy. That’s what I need to keep hold of.

As usual, I implore you to love on your family and friends like you won’t see them tomorrow.

Wednesday, December 16, 2009

Tuf Stuf

It is really hard to watch this happening.

She slept really well last night (over 12 hours), woke up still seeming to be uncomfortable. Roger went out to the pharmacy ASAP and got the new prescriptions, including the morphine. She got her first morphine dose at about 11:30 AM and contrary to the usual logic of knocking her out, it proceeded to pep her up. By 12:30, she was talking, reading with Aunt B, and seemed to be doing pretty well. She had a lovely visit with Ms. Sue-Sue (a neighbor and friend) and another nice reading session with our friend Kim, but by 6 PM she was REALLY fading. Since 6:30 or so, she has seemed very uncomfortable despite having all the medications we can give her at this point. She can't really talk to tell us what she needs and she is obviously not happy. Did I mention how much this sucks? I keep trying to think about the butterfly analogy and just think that it is her cocoon taking over. Sometimes the visualization works and sometimes it just makes me feel horrible. To add insult to injury, the medical equipment company delivered the oxygen machine. I just feel like we're being swallowed up by terminal illness "stuff."

My day was good in that I got a lot of things "checked off" my list. The requests to read with CJ have POURED in and a good part of my day included filling out the calendar. Available spaces are becoming as hard to get as Barbra Streisand tickets in San Francisco but there's still some time available if you are interested. Check out the previous blog post for helpful hints on this.

Thanks for the sweet notes and kind visits we have already received. There have even been some good, healthy snacks coming our way!

tomorrow's agenda includes another visit with the Noah's Children folks and Friday is Jam-Packed with reading/entertaining CJ. Plus, Roger will return to teaching at RNR officially on Friday. Wish him luck!

I'm gonna sign off because I just don't have anything else to say...

Reading to CJ: Helpful Hints

Hi Everyone! Just thought I would offer a little tutorial on the "READING to CJ" stuff as there have been lots of questions. The requests are coming in and we are looking forward to it. I may reiterate some things I posted earlier. To recap:

  1. Go HERE on the website to look at the calendar. The calendar is best viewed if you click on the tab that says agenda. If you click on the Reading to CJ Available item on each day, you will get detailed information about everything including a map with our address, etc.
  2. If people have signed up for a particular day or time OR if we have something already scheduled on the calendar, it is listed on that particular day.
  3. Go HERE (or click the Contact Us link on the website) to send a Read to Charlotte request. Please indicate the dates and times that you prefer as well as whether you would like to come for 1 or 2 hours.
  4. Remember that you do not need to read for the entire time. Singing, music, and visiting are also welcome. If you end up not staying for the entire time, that is ok too.
  5. Healthy children are welcome to come as well.
  6. If you are out of town and have access to a webcam, you can SKYPE in to read to Charlotte. Please send a request in the usual way but let us know that you will be SKYPing in.
  7. Also remember that CJ does not need to be awake in order for you to visit.
  8. Please do NOT bring gifts for us or for CJ. Your visit is a gift beyond measure. We do welcome healthy meals and/or snacks (freezer ready = even better!). You may bring a book/story of your own to share or pillage our library.

I think that's it for now. Thanks again for your support!

Rachel

Tuesday, December 15, 2009

Settling In

Our return trip was easy and relatively uneventful. At least the traveling part.

The day before, Charlotte slept a lot and seemed to be getting more and more uncomfortable. She didn't seem to be in any acute distress but she just seemed to have a lot of discomfort. Her breathing rate has increased and we have noticed more difficulty with her ability to chew and/or swallow her food. She also seems to have more difficulty verbalizing her needs or responding to choices. All in all, Roger and I were noticing changes in her behavior and physical abilities. She can't really walk without trunk support anymore either.

We ended up spending the night at my mom's house instead of the condo. Roger and I got a little bit of sleep but I think it's still more sleep than my mom got. She stayed by her side all night. Knowing my mother, she probably slept little but I know that was time well spent as far as my mom was concerned. The morning dawned rather darkly (emotionally). It was difficult to say goodbye to my mom at the airport and I know it was very difficult for her as well.

As mentioned, the trip through the airports was pretty easy. Charlotte was a good traveler and slept/rested on most of the flights. She did grace us with a MASSIVE poop during the trip from Charlotte to Richmond. Fortunately it was a short flight and Roger took on the challenge of changing her in the tiny airplane bathroom. Kudos to him!

We were met by our limo driver in Richmond. It was funny because when he picked us up, he said that he had NEVER picked up folks at the airport before. Apparently he is an "event" limo driver (for proms, weddings, etc.). It was pretty clear that he'd never done this before since Roger had to actually ask him to help us with our bags. While I navigated CJ in her stroller with a backpack and two bags, the driver carried two small duffel bags, and Roger carried: the car seat, two bags, AND rolled the huge suitcase. So much for customer service. Anyway, it wasn't a big deal and we did enjoy our ride home. CJ conked out again as soon as we got in the car and stayed asleep till about 5:30 this morning.

This morning, I went to Target and Ukrops to get some groceries. Roger and I are on a serious "healthy eating" tear. We have indulged and imbibed way too heavily, not just in the last two weeks but in the last YEAR. I am done with feeling overweight and sluggish. So I filled the pantry and fridge with healthy foods. Hopefully it will last. We will encourage anyone that wants to make us meals to err on the side of healthy rather than comfort. Our mid-sections are in serious need.

Thankfully, we came home to a beautifully clean AND decorated house. Our friend Jan recruited some of her friends and they seriously reorganized our house in our absence. It was needed and we were grateful. Now I'm afraid I'm going to mess it up but it was nice to come home to a clean house. Plus there have been additional Christmas decorations added to create something of a festive atmosphere. I am very grateful for these angels.

Our afternoon consisted of a meeting with our team with Noah's Children. We were finally able to meet Dr. Archuleta, CJ's new primary care physician. Nurse Cathy and "the other Kathy" (our social worker) were also there. We shared our observations over the past few days as well as Charlotte's current medications and Dr. Archuleta had a chance to talk and interact with Charlotte a bit. By the end of the visit, we had discussed numerous options and ideas. While it is possible that some of her fatigue and symptoms could stem from "travel exhaustion", there was general consensus from all of us on the team that she has changed in the past two weeks (and most definitely in the last few days). Most likely, this is due to progression of the disease.

Dr. Archuleta wants to alter her steroid dose for a few days to see if it changes anything. In addition, he has given us a prescription for morphine (a very low dose) to hopefully regulate any pain she is experiencing as well as some of her breathing difficulties. We are discussing more and more what our options and plans will be when the time comes. Man, this sucks.

The team is returning on Thursday to reassess our needs and Roger and I will actually spend a good deal of time with Kathy to talk about some of our wishes for Charlotte once she passes. It is so surreal to have these kind of discussions. I can't even explain it. It's like an out of body experience.

After the team left, Charlotte watched some TV and hung out with Uncle Kolbey for a bit. I tried to get a few things done (catching up on emails, unpacking a few things, etc.) before he had to leave for his concert at the HAAC.

Aunt B (Roger's sister) arrived at about 5 this evening and Charlotte got to spend a little time with her before she fell asleep. Those of you following us on Facebook know that Roger was trying to find out if Santa came through on the firetrucks already (those of you who live in Hanover County know what I'm talking about). Well, apparently Santa's visit to our neighborhood was last night, while we were flying over Georgia. Not to be deterred, our network jumped to the task and Meredith contacted the fire station about making an extra stop for Charlotte tonight. They agreed to stop by our house before the rest of their run at about 6:30 tonight. Of course, Charlotte fell asleep about 15 minutes before they arrived!! I tried to rouse her a bit to say hi to Santa but I think she was a little bit out of it. I am still grateful to the Ashland Fire Dept. for coming by! Thanks to Meredith for her help!

Roger actually went to work tonight. There was a FACES event and Roger and our RNR standby Anna went in to entertain the troops! He's on his way back as I type this. I think he is definitely ready to get back into the RNR groove.

Regarding the Reading Vigil AKA Reading to CJ: A few of you have contacted me via the website and/or email about reading to CJ. I just want to clarify. I am going to work on the "official" schedule. There will be probably be times blocked out when we are NOT available for reading. Otherwise, pretty much any time is open. When you email me, please do so through the website and please let me know the best times for YOU and whether you expect to stay one hour, two hours, etc. I have not updated the calendar and/or website yet but will do so by tomorrow. If you have contacted me, I will try to get back with you by tomorrow as well. For now, I think we will keep the reading to between 6 AM and 10 PM but eventually, it could be a 24 hour thing. It may fluctuate based on her schedule. If you are from out of town and want to SKYPE in via webcam, that is a definite possibility. Also, CJ does NOT need to be awake. Please be ready to read to her even if she is asleep. That's part of the plan. It also does not need to be strictly reading. We welcome music, songs, or anything kind of "mellow". It could also be visiting time. Please do not bring any gifts for CJ when you come to read. Your visit is a gift beyond measure. You may bring a special story to SHARE but not to leave. We also have many books here at your disposal.

Before I close, I want to share something specifically for our Denver network: a family that we met in Houston lives in the Denver area. They just returned from a four month stay in Houston and they are in need of pretty significant assistance. I know that we have a great network of friends and family in the Denver area who would like to help us. Well, I would like to make this family the first "unofficial" recipients of the CJSTUF goodwill network. I need one person from the Denver area who would be willing to act as point person and liaison for this family. I think right now, aside from the moral support, they need meals, financial assistance (fundraisers?), and some help caring for their other daughter while they deal with their sick daughter's (probably terminal) illness. This point person would contact the family (with my help), find out their needs, and then network with the rest of our Denver network to assist in any way necessary. We may use this blog and our website as a vehicle to assist them as well. If you live in the Denver area and think this might be the job for you, please email me personally at rachel@cjstuf.org This family has no family in Denver to help them. Knowing how much we have benefitted from our local network, I can only imagine what having local assistance will do for them as well.

I think that's it for now. I will sign off and wish you good evening. It's good to be home.

Sunday, December 13, 2009

Headed Home Soon

This has been a good few days. On Friday, we took the little girls (CJ and Tricia) to see The Princess and The Frog. It was fabulous with lots of great music and humor for all ages. CJ was entranced and Tricia fell asleep halfway through (it was just at naptime). Friday night we ventured over to Orlando for the first night of Hanukkah (Chanukah/Honika/CCHHHHanukah). My high school pal Kim was hosting a Latke Party at her house and it was very fun. Roger and I even spun the dreidel a bit.

Saturday, we decided that CJ liked The Princess and The Frog so much that we went for a second time. CJ even wore her Cinderella costume this time. I think we all still liked it just as much (if not more). The music is still floating around in my head.

Then it was on to my mom's house where we were joined by most of our family: my mom and stepdad, mom's sisters (my aunts), their spouses (my uncles), cousin Sarah, her husband John, their daughter Tricia, and my godmother Mary Ann. The only significant omissions were Kolbey (currently holding down the fort in VA) and cousin Gina (stuck in Seattle). We missed them but it was a good time had by all. The eating was GOOD. My Aunt Shelley did 99.9% of the cooking and it was a feast full of all the comforts of home: turkey, ham, the "family recipe" stuffing, mashed taters, kahlua sweet potatoes, cranberry sauce, green beans (gotta have something green), and pumpkin pie and assorted sweets for dessert. YUM!

After that feast, we all retired to socializing. CJ fell asleep in Granny's arms and after a while we retired to the condo. I didn't sleep well last night. I've had mixed feelings about returning to Virginia. I have definitely missed home but this has been such an enjoyable vacation. Roger is pretty much ready to go back to work and will probably resume many of his RNR duties during the next week or so. I'm still not sure what I am ready for. There's multiple reasons but suffice it to say that I'm just not quite there. Anyway, eventually I did fall asleep only to be awakened by CJ calling me at about 4:30 AM. she was up in bed and her diaper had somehow come undone so the bedding was all wet. I changed her and got her out on the couch and then set to cleaning the bed linens. About 6 AM I woke Roger so I could get another hour or so of sleep. Then we headed back to mom's house about 8:30 for breakfast.

Breakfast was an encore of last night's dinner and nobody complained! There was plenty of food and it was really good. We're not a family limited by the "rules" of what is or is not breakfast food.

The family hung out for a little while longer and then the S. Florida contingent said their goodbyes. The day was sunny (finally) so mom and I took Charlotte out for a walk in the neighborhood. Shortly after our return from the walk, Charlotte indicated that she needed to poop and wanted to lie down on the floor (this has become a regular habit). We tried to "get things moving" with belly rubs and leg pumps but after a half hour, nothing was moving. We had a pending appointment (which I'll get to in a moment) so we put CJ in the car and headed out, hoping for the best.

Our pending appointment was a lovely venture on a boat. Our family friends, Don and Joanne Hawkins, had invited Roger, Charlotte, and I to take a ride on their boat on the intracoastal so we headed down to Ponce Inlet for an afternoon journey. In true form, Charlotte fell asleep on the way there. She actually stayed asleep for the whole boat ride(!!) Roger and I enjoyed the experience, though. It was lovely to hang out on this boat with such lovely people. The weather was perfect and the scenery was gorgeous.

On the way home, Charlotte stirred a little but she definitely did not seem comfortable. We got back to my mom's place and tried to encourage "the poop". She laid on the couch for a while, dozing off and on. Finally, Roger held her for a while and she let go. It was a MASSIVE poop. Then she fell asleep again. She's been asleep off and on since about 2:15 PM (it's now 8:30) and she doesn't seem too happy. Not sure what she wants...

I think this is where we are headed. I feel like we've taken a turn in the process. Not sure where things will go from here, but as Roger and I have said before, our vacation could not have had better timing. So tomorrow we head for home. We will leave for the airport about 1 PM and we should arrive in Richmond (assuming all will run according to schedule) about 9:45 PM. SUPPOSEDLY a limo will be waiting for us upon arrival. I think even with all the gifts we've accumulated along the way, we are only going home with one extra bag and maybe one box mailed to the house.

Before I forget, a few "Read to CJ" requests have come in. I have not really responded to them yet but that will be first on my agenda when we get back. If you are one of the many who expressed interest in reading to our girl, please go to our website and click on the CONTACT US link. You can send an email directly with your availability or desired dates to read to our girl. We will start this on 12/16. We don't have many definite plans other than home health visits so we are probably pretty open. Visits from kids are welcome too.

So I bid farewell to our FLA friends and give thanks for the wonderful hospitality we have received from friends and family while we were here. To our Virginia friends: see y'all soon!

Friday, December 11, 2009

Days On The Beach

As usual, the last few days have had their ups and downs. Mostly ups.

Grandpa (my dad) got in Tuesday and the three us met Rachel’s godmother, Mary Ann, and Bob and Phoebe Smith at a local Italian restaurant for dinner (Bob is the pastor who married us). Granny kept watch over CJ. The food was amazing and adult conversation was very nice to have. In the economically devastated area known as Daytona Beach, Florida, there are some very bright lights in the darkness. Aurelia’s is one of them. It’s back in the original location after forays elsewhere in the area and Aurelia (The owner), who is energetic and vibrant in spite of her age, still cooks all the food after all these years and comes around to all the tables to visit if she can.

We had a couple of “receptions” (for want of a better word) in the event room at the Caribbean (where we’re staying) on Wednesday evening and Thursday afternoon. People were invited to come by with books to read to Charlotte and nosh on goodies (mostly homemade by Granny). There were also custom made pink and purple M&Ms with Charlotte’s face printed on some as well as the phrases, “CJ ROCKS” and “THUMBS UP.” On Wednesday, I wheeled CJ, all dressed up in her brand new Cinderella outfit and looking FABULOUS to a spot next to some chairs with some good light overhead and left everyone else to pay attention to her. They did. Throughout the evening, many, many books were read to her and Charlotte loved it. There was this one duo of teenage girls who looked like typical teenage girls, wishing they were anywhere but there. I’m not sure of the back story but there was this discernable thawing of the façade the moment they met CJ. Charlotte was doing her typical thing and was telling everyone about Dora or Frosty or whatever was on her mind at the moment and charming the heck out of everyone. She started petering out right at the prescribed closing time and we headed back downstairs.

Thursday was sort of more of the same except that CJ’s completely screwed up sleep schedule had her up at 3:30am which means she fell asleep sometime after 1pm. The second reception was supposed to start at 2. I let her sleep until about 2:15, got her dressed in her other, non-winged Tinkerbell dress, and we headed up.

We made our fashionably late entrance and I parked her in the same place. I was worried she wouldn’t enjoy herself this time because she was still groggy from her nap but within a half hour, she was back in form.

During both events, there were several people from Rachel’s far distant past (former teachers, family friends, etc…) who brought some wonderful books to read. A particularly engaging rendition of Five Little Monkeys Jumping On The Bed was done by Karen Ricks. Charlotte was all into it, finishing every line and then telling everyone the finer points of monkeys and their activities.

After that, the family retired to our unit and had some dinner. CJ and Tricia ended up watching videos in CJ’s bed and eventually, Rachel and I left Grandpa in charge and went for a walk. It was chilly and very windy on the beach and before long my ears started hurting. I felt the need for hot tea so we ended up at the local Dennys which was actually open. Seems silly but with all the vacant property around, there doesn’t seem much reason to keep stores open past 9pm, even if Dennys is supposed to be 24hr.

Over tea and “pancake puppies” (very yummy, I highly recommend them!), Rachel and I had another one of THOSE talks. A “keepin’ it together” talk. We both always get a lot out of them and end up liking each other again afterwards.

When we got back, Charlotte was still awake and Grandpa was snuggling with her on the bed. We let him stay there and got a good amount of little stuff done (including getting a lot of photos onto the Facebook site). CJ ended up staying awake until 4:00 in the morning! We sent my dad to bed a bit after midnight and Mommy and I took our shifts. It’s now 9:20am as I write and CJ is still asleep. Her sleep schedule is sooooo messed up right now but it kind of doesn’t matter as long as the team effort holds out.

That’s one of the things that continually stays with me and I know I’ve said it before. We have such a great network and have rarely been left without help when we asked for it. What does a single parent do when this kind of thing happens? How about families with inadequate or no insurance? It boggles my mind. I’m really hoping we can make a difference with CJSTUF (or even with one of the many other wonderful organizations out there helping people out). I’m kind of counting on it.

A shout out to Annette who is taking some very well deserved time off on a Disney adventure of her own! Another shout out to Ruth Campbell and the other Mechanicsville Moms for organizing the Used Book Sale at RNR last night for CJSTUF. I believe a little over $350 was raised and they plan to repeat the event in March 2010.

CJ seems to be stirring so we will sign off...

Days on the Beach

As usual, the last few days have had their ups and downs. Mostly ups.

Grandpa (my dad) got in Tuesday and the three us met Rachel’s godmother, Mary Ann, and Bob and Phoebe Smith at a local Italian restaurant for dinner (Bob is the pastor who married us). Granny kept watch over CJ. The food was amazing and adult conversation was very nice to have.In the economically devastated area known as Daytona Beach, Florida, there are some very bright lights in the darkness. Aurelia’s is one of them. It’s back in the original location after forays elsewhere in the area and Aurelia (The owner), who is energetic and vibrant in spite of her age, still cooks all the food after all these years and comes around to all the tables to visit if she can.

We had a couple of “receptions” (for want of a better word) in the event room at the Caribbean (where we’re staying) on Wednesday evening and Thursday afternoon. People were invited to come by with books to read to Charlotte and nosh on goodies (mostly homemade by Granny). There were also custom made pink and purple M&Ms with Charlotte’s face printed on some as well as the phrases, “CJ ROCKS” and “THUMBS UP.”On Wednesday, I wheeled CJ, all dressed up in her brand new Cinderella outfit and looking FABULOUS!, to a spot next to some chairs with some good light overhead and left everyone else to pay attention to her. They did. Throughout the evening, many, many books were read to her and Charlotte loved it. There was this one duo of teenage girls who looked like typical teenage girls, wishing they were anywhere but there. I’m not sure of the back story but there was this discernable thawing of the façade the moment they met CJ. Charlotte was doing her typical thing and was telling everyone about Dora or Frosty or whatever was on her mind at the moment and charming the heck out of everyone. She started petering out right at the prescribed closing time and we headed back downstairs.Thursday was sort of more of the same except that CJ’s completely screwed up sleep schedule had her up at 3:30am which means she fell asleep sometime after 1pm. The second reception was supposed to start at 2. I let her sleep until about 2:15, got her dressed in her other, non-winged Tinkerbell dress, and we headed up.We made our fashionably late entrance and I parked her in the same place. I was worried she wouldn’t enjoy herself this time because she was still groggy from her nap but within a half hour, she was back in form.During both events, there were several people from Rachel’s far distant past (former teachers, family friends, etc…) who brought some wonderful books to read. A particularly engaging rendition of Five Little Monkeys Jumping On The Bed was done by Karen Ricks. Charlotte was all into it, finishing every line and then telling everyone the finer points of monkeys and their activities.

After that, the family retired to our unit and had some dinner. CJ and Tricia ended up watching videos in CJ’s bed and eventually, Rachel and I left Grandpa in charge and went for a walk. It was chilly and very windy on the beach and before long my ears started hurting. I felt the need for hot tea so we ended up at the local Dennys which was actually open. Seems silly but with all the vacant property around, there doesn’t seem much reason to keep stores open past 9pm, even if Dennys is supposed to be 24hr.Over tea and “pancake puppies” (very yummy, I highly recommend them!), Rachel and I had another one of THOSE talks. A “keepin’ it together” talk. We both always get a lot out of them and end up liking each other again afterwards.

When we got back, Charlotte was still awake and Grandpa was snuggling with her on the bed. We let him stay there and got a good amount of little stuff done (including getting a lot of photos onto the Facebook site). CJ ended up staying awake until 4:00 in the morning! We sent my dad to bed a bit after midnight and Mommy and I took our shifts. It’s now 9:20am as I write and CJ is still asleep. Her sleep schedule is sooooo messed up right now but it kind of doesn’t matter as long as the team effort holds out.

That’s one of the things that continually stays with me and I know I’ve said it before. We have such a great network and have rarely been left without help when we asked for it. What does a single parent do when this kind of thing happens? How about families with inadequate or no insurance? It boggles my mind. I’m really hoping we can make a difference with CJSTUF (or even with one of the many other wonderful organizations out there helping people out). I’m kind of counting on it.

A shout out to Annette who is taking some very well deserved time off on a Disney adventure of her own! A second shout-out to Ruth Campbell and the other Mechanicsville Moms. The Used Book Sale for CJSTUF raised over $350 last night. Word has it they are planning an encore in March 2010.

I think CJ is stirring so we will close this post...

Tuesday, December 8, 2009

Eeek! Correction!

Just want to clarify that the booksale at Romp n' Roll is Thursday 12/10 (not tomorrow) from 3-7 PM. You can tell that I'm on vacation because I have no idea what the date is!

Anyway, come out from 3-7 PM on THURSDAY and buy some used books for CJSTUF.

Not much to report today. We had a "beach bum" kind of day at the condo. Charlotte sat on the balcony almost the entire day, eating and enjoying watching the ocean. Not a bad way to spend the day. We had dinner with my godmother and old friends and Charlotte enjoyed the evening with Granny until she "pooped out" herself.

We're off to bed...

Rachel, Roger, and CJ

Animal Kingdom

Yesterday was our final day at GKTW. We checked out of our Villa and got the car all packed. We have a whole suitcase full of gifts from GKTW as well as a few souvenirs. Good thing one of her daily gifts at GKTW was a GKTW duffel bag! Before we checked out, we got to meet Leah. She is one of the event coordinators at GKTW and her dad is pastor at the church in Pierson where my stepdad (John) helps out from time to time. Small world, eh?

One of the coolest things about our checkout process was that they give us this passport. We have a full year to visit places all over the country that participate in the GKTW program. We can go to places like Hershey Park, Kings Dominion, Hyland Hills Water World, etc. for FREE with usually a week or two notice. What a great thing. At some point, I will list all the corporate sponsors and companies that make places like GKTW possible. These are businesses doing great things for families in need and they deserve your business!

After we said goodbye to GKTW, we headed over to Animal Kingdom. Again, we got the primo parking. We made our way into the park and headed off to the safari ride. Got to see lots of animals from crocs to hippos to lions. We then went on the Rafiki train ride and over at the Conservation Station we met Rafiki and Jiminy Cricket. Another great example of how Disney employees treat the Make-A-Wish families: as we were coming in to the Conservation Station, we saw Rafiki doing his meet and greet. We went up to see him and Rafiki's "assistant" told us that he was about to take a break and would be back in about 5 minutes. No problem. We were totally cool with that. Rafiki, however, had other ideas. He saw CJ (and probably Roger's Make-A-Wish tee) and stopped to greet her and take a few pictures. We got nice hugs from him too.
Later, when we went to see Jiminy Cricket, we pulled up to stand in line. It wasn't a very long line (maybe about 3-4 families) so we just pulled into the queue. One of the assistants looks over at us and says, "You know that you don't get in line. Come on over here!" And with that, we were bumped to the front. It was funny!

During the morning, Charlotte was very low key. She didn't really perk up and was very quiet. Roger and I weren't really feeling all that great either so it was kind of a rough morning. Things got better after lunch, though. We ate at the Yak and Yeti which was a Pan-Asian restaurant with cool Hindu decor. You felt like you were in a lodge in the mountains of India or Pakistan. Roger had a great meal of pan-seared miso salmon with rice and veggies. I had fried green beans with a chili-plum sauce and pan seared pork wontons with a lime soy sauce. Both were yummy!

After lunch, CJ seemed to perk up a bit and became much more talkative. We headed over to the Finding Nemo Musical show and we were AMAZED! First of all, we totally beat the crowds with our access pass. The musical was great and we were all entranced. They use puppets and live singers a la The Lion King musical. I think that was the highlight of everyone's day. CJ laughed at the funny parts and was entranced by the music.

From there, we went to see the 3-D bug movie (from A Bug's Life) and then found our stations for the parade. The parade at Animal Kingdom was not as interactive as the Magic Kingdom parade but there were great animal costumes, floats, and some of our favorite characters. From there, we left the park and drove to Daytona Beach. We had dinner with my mom and got settled in our condo. We are staying in one of my godmother's condominium units and it's GORGEOUS. 2nd floor...right on the ocean. I had forgotten how calming the sound of the ocean can be. We have had a nice night of rest and we have been enjoying the morning. Roger's dad drove down to spend a few days with us and we are planning to take the next few days VERY easily.

Roger noted yesterday that the extra steroid seemed to help with the tremors. We are already noticing those effects wearing off, though. The tremors seem to be coming back and we are debating the advantages of increasing the steroid versus letting things progress. May need to consult with the docs before the trip is over.

Before I sign off, one final plug for an event in the Richmond area:

The Mechanicsville Moms are holding a used book sale at Romp n' Roll-VCM tomorrow (12/10) from 3-7 PM. There will be books available for all ages. Please stop by. All funds raised will go towards CJSTUF.

Also, the CJSTUF website is LIVE. Go there and check it out. Huge thanks to Ruth and Jay Campbell who have worked so diligently to get this going for us. It looks great! There is an events calendar where we will post upcoming events of all kinds. There is also a "read with CJ" calendar. If you are one of the many who would like to read with CJ, please fill out the form (on the Contact Us link) and we will get back to you about dates and times. We will officially start that upon our return from Florida (on or about 12/16). You will also be able to read the blog and connect through Facebook via the website. More changes to come but this is a wonderful start.

Sea World!

Another awesome day today. This time at Sea World.

But first, we have to talk about the tuck-in with Mayor Clayton's wife, Miss Mary. We had booked the tuck-in for 9pm last night and they arrived right on time. We had been preparing Charlotte so that she wouldn't freak out when this giant rabbit walked through ther door.Miss Mary, wearing her PJs, came in with her assistant and proceeded to kiss, hug, and generally love all over Charlotte. They started on the couch in the livingroom but after a little while, they walked together to her bed. We laid CJ down, pulled up her covers, and Miss Mary tucked her in. There was a little more smoochin' and such, Miss Mary gave CJ a copy of their official holiday photo, and she took her leave.We then changed her dressing which is always fun but Mommy is pretty good at it so it was done in no time. I started reading her the Tinkerbell Hide and Seek book and she was out before I was 3/4 finished.

This morning, we ate at the express breakfast spot conveniently located in the ice cream parlor. (Mommy had a banana split! I’m doing something similar tomorrow morning.)Back to Sea World: This morning, we met up with Cousin Julie and her darling daughter Chloe, Catherine Daw (Randolph-Macon alumna), and her mother near the front gate. Catherine arranged for a penguin meet and got us discounted food.Our first stop was the dolphin show which was as much "Cirque de Parfait" as dolphin show. It was still very cool. We also checked out the manatees, seals, and the shark tank. Then we went to eat, which is always good.Our timing was really great because just as we were getting ready to walk into the restaurant, out from a side door came Abby Cadabby, Elmo, Bert, and Ernie! We were second in line. Charlotte enjoyed it.

After lunch we headed over to the penguin house to meet up with the tour guide. She took us in to the regular viewing area take a look at the various species and I was surprised that a large penguin that looked suspiciously like an emperor penguin was actually a king penguin. (Fun fact for the day: the emperor has the king by about a foot and 20-30lbs!)Next we went back and learned a few tidbits about what they do there including the word, "aviculturalist." That's a person who cares for birds.THEN came the good stuff! We went all the way back around to where the loading docks are and into a door leading behind the exhibit. It was very...aromatic, to put it mildly! There we meet Ludwig, a young male king penguin who I guess is used to greeting people. I put CJ down and along with a couple other boys, we got to pet his back and head and torment him a little. Actually, it was just me. Charlotte brought her little stuffed penguin in with her and I thought it would kind of fun to introduce it to Ludwig. After a little bit of that, the aviculturalist gently said, "I think you're kind of freaking him out." Another case of me doing something which I THOUGHT was cool and funny but was really stupid and thoughtless. I apologized to Ludwig profusely and put "Penguino" away. No real harm done. Ludwig felt very soft on his head and surprisingly solid on his back. Almost like bare skin.Then we got to go into a little back area right inside the actual exhibit which is where I saw the coolest thing. The aviculturalist mentioned the sounds the various penguins make and as another king came over to check us out, she leaned over, whispered something in his ear that sounded kind of like, "Can you please speak for the silly tourists?" and, I kid you not, the king very slowly stretched his neck and head up/back, wound up, and let out that classic penguin call right on cue. I was far more amused than Charlotte, who was actually getting very cold.Next we met a puffin but we didn't get to touch it. We DID get to see it projectile poop across the floor! Needs to give Charlotte some lessons.

After that, we went to the polar exhibit where we saw a mini-movie edited from The Polar Express which seriously grabbed CJ's attention. Then we saw beluga whales, walruses, AND, for all you old Denverites...SNOW!!! No really, the polar bear named "Snow;" sister of "Klondike;" both of whom were born and raised in Denver. It was very exciting to see her (although she really didn't do much). Very much a blast from the past. Klondike was there somewhere but not out front.That just about did it for Sea World. Something I really liked about the grounds were the holiday decorations. There were a couple of huge Christmas trees, one of which was all aqua blue.We said our goodbyes to Julie, Chloe, Catherine, and Catherine’s mom in the parking lot and headed over to Downtown Disney for the second time (we spent some time there yesterday).

Rachel met up with several old high school friends and I tended to CJ who fell asleep just as we were getting there.While Rachel caught up with everyone, I started talking to the couple sitting next to us and found out the husband flies an old Korean War era prop plane in air shows. They are nuts about Disney (their 27th visit I think!) and CJ ended up with a trading pin shaped like a heart with Belle in the center. A "Hidden Mickey" pin which I guess is kind of special. CJ woke up after about an hour and a half and we headed out.Last but not least, we picked up the local car we're using the next week (thanks Kim's parents!), dropped off the rental van at the airport and came back to GKTW to pack for tomorrow.

We’re checking out early and heading to Animal Kingdom. We know that the animals are very active in the mornings. We hope to check out the Finding Nemo show among other things.Then we’re off to Daytona Beach for the second week of our trip.Charlotte continues to plug along. The extra dose of steroid has seemed to have smoothed out the tremor that had been creeping back in. We’ll see how long that lasts. She’s still eating like a horse when she gets something she likes in front of her. We still get sad every now and then but the worst of it has been held at bay by the amazing experiences we’ve been having and by the happiness we’ve seen in Charlotte’s eyes. It’s really been a tremendous trip. Keep your eyes peeled for more pics! Our internet connection here isn't letting us post pictures so we will see what happens.

Sea World!

Another awesome day today. This time at Sea World.

But first, we have to talk about the tuck-in with Mayor Clayton's wife, Miss Mary. We had booked the tuck-in for 9pm last night and they arrived right on time. We had been preparing Charlotte so that she wouldn't freak out when this giant rabbit walked through ther door.Miss Mary, wearing her PJs, came in with her assistant and proceeded to kiss, hug, and generally love all over Charlotte. They started on the couch in the livingroom but after a little while, they walked together to her bed. We laid CJ down, pulled up her covers, and Miss Mary tucked her in. There was a little more smoochin' and such, Miss Mary gave CJ a copy of their official holiday photo, and she took her leave.We then changed her dressing which is always fun but Mommy is pretty good at it so it was done in no time. I started reading her the Tinkerbell Hide and Seek book and she was out before I was 3/4 finished.

This morning, we ate at the express breakfast spot conveniently located in the ice cream parlor. (Mommy had a banana split! I’m doing something similar tomorrow morning.)

Back to Sea World: This morning, we met up with Cousin Julie and her darling daughter Chloe, Catherine Daw (Randolph-Macon alumna), and her mother near the front gate. Catherine arranged for a penguin meet and got us discounted food.Our first stop was the dolphin show which was as much "Cirque de Parfait" as dolphin show. It was still very cool. We also checked out the manatees, seals, and the shark tank. Then we went to eat, which is always good.Our timing was really great because just as we were getting ready to walk into the restaurant, out from a side door came Abby Cadabby, Elmo, Bert, and Ernie! We were second in line. Charlotte enjoyed it.After lunch we headed over to the penguin house to meet up with the tour guide. She took us in to the regular viewing area take a look at the various species and I was surprised that a large penguin that looked suspiciously like an emperor penguin was actually a king penguin. (Fun fact for the day: the emperor has the king by about a foot and 20-30lbs!)Next we went back and learned a few tidbits about what they do there including the word, "aviculturalist." That's a person who cares for birds.THEN came the good stuff! We went all the way back around to where the loading docks are and into a door leading behind the exhibit. It was very...aromatic, to put it mildly! There we meet Ludwig, a young male king penguin who I guess is used to greeting people. I put CJ down and along with a couple other boys, we got to pet his back and head and torment him a little. Actually, it was just me. Charlotte brought her little stuffed penguin in with her and I thought it would kind of fun to introduce it to Ludwig. After a little bit of that, the aviculturalist gently said, "I think you're kind of freaking him out." Another case of me doing something which I THOUGHT was cool and funny but was really stupid and thoughtless. I apologized to Ludwig profusely and put "Penguino" away. No real harm done. Ludwig felt very soft on his head and surprisingly solid on his back. Almost like bare skin.Then we got to go into a little back area right inside the actual exhibit which is where I saw the coolest thing. The aviculturalist mentioned the sounds the various penguins make and as another king came over to check us out, she leaned over, whispered something in his ear that sounded kind of like, "Can you please speak for the silly tourists?" and, I kid you not, the king very slowly stretched his neck and head up/back, wound up, and let out that classic penguin call right on cue. I was far more amused than Charlotte, who was actually getting very cold.Next we met a puffin but we didn't get to touch it. We DID get to see it projectile poop across the floor! Needs to give Charlotte some lessons.After that, we went to the polar exhibit where we saw a mini-movie edited from The Polar Express which seriously grabbed CJ's attention. Then we saw beluga whales, walruses, AND, for all you old Denverites...SNOW!!! No really, the polar bear named "Snow;" sister of "Klondike;" both of whom were born and raised in Denver. It was very exciting to see her (although she really didn't do much). Very much a blast from the past. Klondike was there somewhere but not out front.That just about did it for Sea World. Something I really liked about the grounds were the holiday decorations. There were a couple of huge Christmas trees, one of which was all aqua blue.

We said our goodbyes to Julie, Chloe, Catherine, and Catherine’s mom in the parking lot and headed over to Downtown Disney for the second time (we spent some time there yesterday). Rachel met up with several old high school friends and I tended to CJ who fell asleep just as we were getting there.While Rachel caught up with everyone, I started talking to the couple sitting next to us and found out the husband flies an old Korean War era prop plane in air shows. They are nuts about Disney (their 27th visit I think!) and CJ ended up with a trading pin shaped like a heart with Belle in the center. A "Hidden Mickey" pin which I guess is kind of special. CJ woke up after about an hour and a half and we headed out.Last but not least, we picked up the local car we're using the next week (thanks Kim's parents!), dropped off the rental van at the airport and came back to GKTW to pack for tomorrow. We’re checking out early and heading to Animal Kingdom. We know that the animals are very active in the mornings. We hope to check out the Finding Nemo show among other things.Then we’re off to Daytona Beach for the second week of our trip.Charlotte continues to plug along. The extra dose of steroid has seemed to have smoothed out the tremor that had been creeping back in. We’ll see how long that lasts. She’s still eating like a horse when she gets something she likes in front of her. We still get sad every now and then but the worst of it has been held at bay by the amazing experiences we’ve been having and by the happiness we’ve seen in Charlotte’s eyes. It’s really been a tremendous trip. Keep your eyes peeled for more pics! We tried to post some within the blog but the internet connection is not strong here.

Saturday, December 5, 2009

Three Days Worth of News...Long Post Ahead!


First of all, Beth has sent us a link to the pictures she took on our first day at the Magic Kingdom. Enjoy! Again, we are so grateful that she came to Disney with us and shared her time and talent. Thanks also to a whole host of people who helped her with accommodations, airfare, etc.


Now to pick up where we left off:
Charlotte slept until about 7 PM Wednesday night. We woke her up because we didn’t want her sleeping till 10 or 11 and then being up all night. Our plan was thwarted anyway. She was awake until 5 AM. Yes, you read that correctly. 5 AM! She just kept eating, watching movies, reading books. And NOT falling asleep. Roger and I took turns staying up with her but neither one of us really got much sleep. We finally decided to take her for a drive and she was out less than a mile down the road. Looks like we are back to resorting to infant sleep strategies.
Anyway, we decided to let her sleep and Roger and I went back to bed as well for a bit. My cousin Sarah, her husband John and their almost 3 year old daughter Tricia were on their way to join us for a day of fun at the Magic Kingdom so we diverted them away from the park and towards GKTW. We showed them around the resort and Tricia got to check out the Candy Land playground while Charlotte and Roger slept. Tricia had never met Charlotte (or CJ as she calls her) but it was so cute that from the moment she got to the resort she kept saying “Go see CJ? Where CJ?”



Charlotte got up about 10. We grabbed some breakfast/brunch and finally headed off to the park. We piled into one vehicle to save on parking. I think we made it into the park right before noon. The plan was pretty much a re-do of the day before. We went back to Mickey’s Toon Town Fair to see Mickey, Minnie, and the Fairies. This time, Tricia joined us in the experience. Yet again, we got great “star treatment” with our access pass. I think the park may have been even busier on Thursday and it was good not to have to wait HOURS to see the characters. When we went back to see the fairies, Rosetta was the same cast member as the day before, and as soon as Charlotte walked in, she said “Charlotte! You came back to see us again!” It was so great. This time I caught the whole experience on video and will post that soon on our new YouTube site (links will be provided). Her visit with the Fairies was still, I think, the highlight of the trip.



We got some lunch and then headed over to Fantasyland again. We repeated a few rides from the day before (Winnie the Pooh, Dumbo), tried a few new rides that we missed the day before (the 3-D movie Philharmagic which CJ LOVED), and we met Tigger, Pooh, Eeyore, and Peter Pan.


At this point, we headed towards Adventureland so we could scope out a good spot for the parade. We found a good “accessible” point and then Roger and CJ kind of camped out while we kept Tricia busy browsing Adventureland and getting ice cream.


The parade was fun and fabulous. Because of our great seat, many of the “walking” characters (those not on floats) came up to Charlotte and greeted her personally. She really loved seeing Stitch and waved at many of the other characters. Ariel even noticed (way up on top of her float) that CJ was wearing her mermaid dress today and blew a kiss right at her!


After the parade, we made our way with the crowds out of the park, got some dinner at Cracker Barrel (yum) and hugged goodbyes to Tricia, Sarah, and John. We’ll see them again next week but it was so great to be able to pal around with them in the park. Tricia was a doll and so much fun to play with. She really made Charlotte laugh with her jokes and funny phrases too. We were on our way to dinner when we started telling jokes. Roger tried to teach her the “interrupting cow” joke (it’s a knock-knock joke) and Tricia’s interpretation was to say in her toddler voice, “Knock knock. Who’s there? (long pause) MOO!” It had all of us (including Charlotte) in stitches!


Friday dawned bright and…rainy. It was raining from early on and the forecast was pretty much rain all day. The original plan had been to meet up with a bunch of people at Animal Kingdom but we pretty soon nixed those plans. Through conference calls and logistical arranging, we decided to all go to a lovely mall in the area that has nice holiday decorations, a kid area, and a food court. The crew included two of my friends from High School (Cara and Kim) and their kids, my friend Jamie (our current paparazzi), and cousin Julie, Aunt Jeanne, and Julie’s 17 month old Chloe. We pretty much hung out at the mall for about 4 hours talking, letting the kids play, window shopping, and eating lunch. Despite the diverse group and the abrupt change in plans, I think it all worked out pretty well.


As the rain continued, we said goodbye to Kim and Cara and the rest of our “crew” caravanned back to GKTW. Roger, Jamie, and Julie went to get ice cream when we got back to the resort while I stayed at the Villa with CJ, Chloe, and Aunt Jeanne. It was a great visit with everyone.
Around dinner time, we left Aunt Jamie in charge of CJ and Jeanne and Julie drove Roger and I over to Epcot to drop us off for our “date”. The plan was to trek through the Nations of the World and sample the food and beverages (mostly beverages) of each country. We knew we would both drink so we planned to take a taxi back to GKTW.


Here was our itinerary:
Mexico (margaritas and flautas)

Norway (no eating…we just rode the Maelstrom)

China (plum wine and noodle soup)Germany (beer and brats)

Japan (warm sake)

Italy (a sampling/tasting of three white wines)

Morocco (Coffee with hazelnut liquer and baklava)

France (cognac)

England (ale)


Ok, so yes, that’s a lot of alcohol and yes, we were pretty inebriated by the end of the night. In our defense, at most of the countries we shared one drink and shared one serving of each of the food. On that note, I don’t remember much of what happened after England. Roger got me to the car and we got home safely but we both definitely woke up this morning with a bit of a hangover. I rarely drink like that and can probably count three other times in my life when I’ve had that much to drink at one time but Roger and I had a great time. We really enjoyed ourselves!


CJ was up bright and early at 4 AM or so. She watched TV for most of the morning while mommy and daddy “recovered”. It was still raining and we knew the rain was supposed to last most of the morning so we had already changed the Sea World plan to Sunday. Eventually, we ventured down to breakfast and then took in some of the Magical Castle at GKTW that we hadn’t checked out yet. Unfortunately, horseback riding was canceled due to the weather, but we rode the carousel, Charlotte got a “touch up” on her manicure at the La-Ti-Da Kids Spa, and she made her special pillow. We also got to make her star. The ceiling of the Magical Castle is covered in 70,000 gold stars that are about 2” in size (each). Every wish child who has stayed at GKTW gets to put their name on a star and then the Star Fairy puts the star in a special place. Each star is barcoded so they will always know where her star is and she (or Roger and I) can come back and visit it anytime now that she has stayed at GKTW. While we can’t ever stay here again, we can come back to volunteer and visit.


After our time venturing out, we headed back to our Villa for a little more rest. We ordered lunch from Katie’s Kitchen (a GKTW favorite that is really Boston Market) and then trekked out to Downtown Disney just as the weather started to clear. We did some window shopping and souvenir shopping at Downtown Disney. Charlotte got a cat nap and we enjoyed the beautiful weather. The sun finally came out!


Our return to the Villa has included getting caught on our updates (hence this posting) and some more R&R time. This was a good “down” day.


Tomorrow’s agenda is Sea World (finally) and an informal reunion with some HS friends at Downtown Disney. Monday will include packing up from GKTW and if time and weather permits, we may finally return to Disney to check out Animal Kingdom. Then it’s off to Daytona Beach for the second half of our vacation.


To close this post, I’m going to re-copy some of Roger’s posts from Facebook from Thursday. This was after her “long night”…


She had a moment early this morning where she got confused and started to cry "I don't know what I want." Today, to kind of give her a way to explain it, I told CJ she was a caterpillar getting ready to go into her chrysalis. Soon she would go to sleep and when she woke up, she would be a beautiful butterfly. She seemed ok with this. In reinforcing the butterfly analogy, I was talking to Charlotte about it outside of Cracker Barrel and I talked about how things are going to get harder and harder to do because the cocoon is going to wrap around her closer and closer. At that point I made a face like I was getting squished and she found that highly amusing. She laughed a lot today and that’s good for everyone.

We hadn’t really officially decided how to explain what is happening to Charlotte to her but I think Roger’s analogy really nailed it. It’s perfect! Yet again, he amazes ME with his patience and vision. Charlotte had so many moments today when she was chatty and “with it”. She also has times where she just seems to regress or drift inward, not wanting to interact with anyone. She has taken to putting her Romp n’ Roll sport bottle in her mouth like a bottle sometimes (with chocolate milk in it, of course) and I think some of that infantile regression is coming out in all its shapes and forms. It’s been so great to enjoy this vacation with her. I’m glad she has all these moments of happiness!