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.


  1. Hugs to you all! Thinking of you! and praying for peace!
    Love Paula Savastano

  2. Rachel, I look up to you and seriously think you and Roger are very strong. It is so amazing.

    If you ever need anything, please let me know.

    Shannon *RM momtojessandemmy

  3. Just letting you know that I am thinking and praying for all of you. This is not a fun waiting period. When I was at this point a few months ago, I kept on relating it to that magical time at birth where we have one foot in heaven and one foot on earth. It gave me some peace. Take care and THANK YOU for the update!!

  4. Rachel - your comment about "Bald Chicks Rule" prompted a thought. When Charlotte is gone, please gather all of her wonderful t-shirts and whatever other clothing you would like to include and I'm going to have a quilt made from them for you. My sister in NC does this and would be honored to 'recycle' these things into something you will have forever. We miss you guys! Christmas was sad without your visit. I owe Roger some oyster stew! and I owe you a large pitcher of mimosas....Love BAM!

  5. Thank you for continuing to share- I cannot fathom how painful it is for you both. I hope that you know that it helps all of us to be able to read your words, I only hope that it helps you just as much to write them. love amy and chris and lucy

  6. Roger and Rachel,
    Your strength is amazing,Thank you for opening RNR on Sunday to help the little ones understand
    about Charlotte, when we know your hearts are breaking. Know ours are breaking for you,Rachel and Charlotte.
    Love and Prayers,
    The DeLuke Family

    Butterfly Kisses to Charlotte

  7. Rachel and Roger, _please_ do not feel like this blog is another obligation. Post when you want to. This is your and Charlotte's journey. Bless you.

    Maria Scott


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