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.

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.

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.

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.