Saturday, November 28, 2009

Good to not so good

It started out as a very cool day and has devolved into darkness.

Our neighbors down the street, led by their soon to be son-in-law, arranged for Sgt. Santa to make a very special stop at our house this morning. It was so awesome! A pink and purple tree appeared on our front lawn along with a pile of presents for Charlotte. Sgt. Santa came by around 9:45 and we sat CJ in her new stroller while he stood with her and we brought her several of the presents to open. She got things like a princess fleece wrap (like a Snuggie), lots of Princess dolls of all kinds, and, of course, books and chocolate. Even Mommy and Daddy got stockings.

It was chilly out and I didn't want her exposed to the wind too long so we adjourned things outside and moved into the house. Rachel even manhandled the tree indoors since the wind was trying its best to knock it over. It's now in our front hallway filling it up and blocking the way. We don't care. It's cool!

The rest of the unopened presents filled up the front living room (what I call the "library") and we've been opening them, slowly but surely, all afternoon (between eating sessions, of course).

The gifts have come from all over the east coast and the generosity is truely amazing. There were even some checks in the mix guaranteeing a wonderful time in Disney World; however, as we've unwrapped them, we've been faced with some stark truths. Most everything she has been given, CJ will never use. One gift is a wonderful fairy treehouse set with everything one could want for playing this sort of role-playing game. She'll never play with it. There were several dolls with clothes and other "accessories" that are beyond her ability to manipulate. It made us rather sad.

We have noticed a marked decline in her motor skills today (especially in her right hand) and she even told us that it was hard for her to pick up her "square macaroni."

I don't think this Disney trip is coming a moment too soon. If she makes it to New Years I'll be very surprised.

Most of the time, I'm relatively together but today has been very hard. I sometimes feel so sad and even as I write this I'm having trouble keeping it together. I feel I'm being very selfish. It doesn't help when I see the videos being imported into the computer. I see how verbal she was and how easily she communicated with us, especially in the sweet voice everyone always talks about. I keep looking for reasons that aren't there and my rationalizations start to crumble. My only hopes, as they have been for some time now, are that Disney is magical for her and that the end is swift, peaceful, and painless. After Disney, I don't know.

We are past the point of needing most advice. We don't need any more gifts unless it's books or donations to her fund. What we CAN use is the main thing you've been giving us all this time, the knowledge that you're there, thinking about us and wishing us the best Disney trip ever. "There are no words" keeps popping up and you're right. There are none. Even if you've been through something like this before, nothing helps. We just have to slog through it day by day knowing you all are out there, sending us good thoughts, wishing you could do more and that every day with her is still a bonus.

Tomorrow we go up to Baltimore and the Ravens/Steelers game. Charlotte's Devon is meeting up with us there. We have VIP passes to everything downtown so we're gonna whoop it up until CJ poops out. By the way, THAT'S not a problem lately. Just in case you're keeping tabs.

Charlotte is already asleep and Rachel and I are going to watch "UP" with the commentary on.

Another "by the way," I can't believe we're about to go over 200,000 hits on Caringbridge. I might have mentioned it before and it may seem strange but I pull solace from that.

Thank you all for everything.


  1. I'm here and loving you guys! Prayers every day....

  2. no words...but many, many prayers.

  3. Our prayers are with you continually as you squeeze every drop of what God has for you in this season of life. Oh, how He loves you. Praying that reality would truly penetrate each of you.

    In Jesus' Name,
    The Dickens Family
    Cambridge, IA
    Friends of the Rietgraf Family - Marty, Deanna, Mikayla and their three wonderful boys

  4. We love you Rachel and Roger. You two are so very strong. I know you don't feel very strong now, but I'm always amazed at how well you hold yourself together for Charlotte's sake. Charlotte we love you and pray for you and hope that TinkerBell and all the princesses are good to you!

    Always in our thoughts and prayers!

    Megan and JosaBella Morton

  5. Thinking of you, Rachel, Roger, and Charlotte. Love, all of the Schwabes.

  6. The three of you are in our thoughts and prayers. Sending lots of love, prayers, and hugs.

    Matt, Kristy, and "other" Drew

  7. Sending positive vibes, heartfelt prayers and lots of love your way!

  8. Lots of prayers for all of you.

  9. I've just started reading about Charlotte in the past month since I saw an article in the Herald Progress. But I've since been following your blog daily. God bless the three of you. I hope your trip to Florida is everything you wish for.

  10. Just sitting here weeping with you. Alan & I think of you often...we need to let you know that. We thought of you while watching the game last night. Holding you up in prayer,
    Christina Blackman

  11. We're with you heart and soul every minute of every day.

    Kate and Dan Mc

  12. Dear Roger, Rachel and Charlotte,

    I have been following your saga ever since it began last winter but, knowing how many people you have who are closer to you than I (this is Maria in the English Department at R-MC), I have felt shy of intruding on your struggle. This last post, however, "got" to me. I do not know why this is happening, but I believe, with you, that Charlotte was sent very specifically to you by a power that knew you would make her life matter. In our Advent Prayers of the People at Holy Comforter in Richmond we give thans for healers and all who minister to the sick and suffering, _and for the sick and suffering themselves_ who invite us to be more than we ever thought we could be. Your little family is an inspiration. Cold comfort, I know; but your faith and love for Charlotte (and each other) resonate in every word you write. Bless you and, for what it's worth, know I am on the list of those praying for you all. I hope Disney World is magical. Maria Scott

  13. I'm praying so much for you all right now, and ... mostly, I'm just in complete awe of your courage and love. You're amazing, hon.


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