Friday, January 1, 2010

On Final Approach...Brace for Impact

We are reasonably certain that Charlotte will be passing either tonight or tomorrow. Her breathing has become erratic and everytime her breath goes down, it's a very long time before it comes back up again. Then, as we've been told would happen, she will sometimes take several breaths in a row. Then back to the slower breaths. It's odd and a little disconcerting to us but strangely peaceful.

I know that when she finally dies, I will be a mess for a while but for the most part, I can't believe how calm and accepting both Rachel and I are. At this point, we've been going through the mourning process for months and it's just time.

The word "surreal" keeps coming back over and over again. And it keeps taking on new meaning. Just lately, "surreal" is the fact that there is very little left of that all-over bodyache that has weighed me down over so much of the past year. I'm just so ready for her to be free. Almost impatient. Tell me that's not surreal. The phrase, "My daughter is going to die" is something I say to myself every now and then for the purpose of testing my grasp on reality. It still kind of jolts me but doesn't leaving me heaving on the floor like it might have before.

I still have my moments when the pipes leak and that can happen at anytime (like when Susan Greenbaum was here yesterday and sang The House At Pooh Corner at CJ's bedside. Not a dry eye in the room) but I think we have a much better grasp on things than those who haven't had the chance to be here with CJ and say their goodbyes the way they may want.

I will do this again, I'm sure, but I would like to thank everyone who has supported us through all this. Most recently, for those who have participated in the "reading vigil," it has been more successful that we ever could have imagined. This morning, The Gruffalo was read to CJ in Dutch, Skyped in from Holland by a high school friend. This afternoon, another high school friend, whom I haven't seen since 1984 or so, Skyped in from Denver (I think that's where she was). We've had many children come read and at one point yesterday, we had something like 12 people in the house. Oh yeah, and Mary Poppins showed up early this morning in her jammies! Carting coffee and scones no less.

All this together has helped us deal with the situation so much healthier than we could have otherwise. I am feeling that this is the way we, as a culture, should deal with death. It's not nice and on the surface seems so unfair that a child should have to die so young but this seems, here's the other word of the day, "healthy." At least as healthy as one could expect.

When CJ passes, we will call Noah's Children so someone can come out to pronounce her body. Then we will call Nelson Funeral Home to come get the body for cremation. Because of our amazing network, we've already started planning the memorial service. As details get sorted out, we'll let you know.

Thank you to our most amazing network and family. We love you and we feel the love you give to Charlotte and to us.

Peace and blessings...


  1. Chris and I appreciate the update. You all do seem very accepting, peaceful, and healthy. Charlotte has touched so many lives. The peace be with you.
    Love, Emily and Chris Starrett

  2. Oh, I am so very sorry!!! I will be praying for your family! I will pray that God will allow Charlotte to be at peace until she takes the hand of Christ!

    Love ya!!
    C.O.L.E.'s Foundation
    (Caring Openly, Loving Eternally)
    24/7 Prayer Line 888-365-COLE (2653)

    Sandy Daron

  3. I saw "Princess and the Frog" today and thought of Charlotte the WHOLE time. We love you all and are praying for you constantly. Everytime I see a butterfly, I think of how beautiful and free they are (and of course tear up). God bless you all, and like everyone else, if you need ANYTHING, please let us know. We love you!

    Bethany & EJ

  4. Charlotte knows that she is loved by so many. You are all in our thoughts and prayers. Peace be with you.

    Bob, Lori, Bethany, and Jillian Callis

  5. Prayers and peace to you all as you face this loss. May you be surrounded by love and comfort.
    -Cher Zall

  6. Roger and Rachel,
    God bless you and your little angel Charlotte.
    We pray your strength stays with you as long as you need it.Know you are in our thoughts and prayers.
    Love and Prayers.
    The DeLuke Family
    Butterfly kisses to Charlotte

  7. Rachel and Roger,
    Praying for God's peace as you walk through these days until Charlotte is safe in the arms of Jesus. Also praying for Gayellen. She adores that sweet, sweet Charlotte.

    Earle and Cara Chute
    COLE's Foundation

  8. You are both so strong. Thinking of you and sending you warm feelings.

  9. I always look for updates because I constantly think of you all no dry eyes here! But I know you all will have some peace in your life.

    I am thinking of you all!

  10. Roger, Rachel; my heart and prayers are with you as precious CJ's life glides towards its close. May God strengthen and comfort you.
    Trish Boyko
    Victoria, BC, Canada

  11. Dear Roger and Rachel,

    Praying for you both as CJ gets her wings. Thank you for taking the time to update her site.

    HUGS and PRAYERS to you from Jacksonville, Fl.

  12. We are praying that your family can continue to feel the love and support behind you and that Charlotte finds peace and comfort.

    Chris, Michele, Patrick and Matthew Brantley

  13. May Charlotte fly high and you both find peace in her passing! Hugs and prayers to you!

    Love Paula

  14. Praying for your family!

    C.O.L.E. Prayer Team

  15. Praying for you, may the Lord lift you up with peace and strength.

  16. May you always feel the love that surronds you and know she'll always be watching you from above. Fly, sweet Charlotte, Fly! Love and hugs and prayers .....Deb

  17. Rachel and Roger -- Praying for peace for you and your sweet Charlotte and sending love your way --

    Lisa Clarke

  18. Roger and Rachel - Our hearts are full with love for you and Charlotte, and thanks for allowing us all to share such grace and to fly along with the butterfly to a better place.

  19. Dear Roger and Rachel, As I talked with Abby on Friday about Charlotte, I thought you might like to hear that Abby immediately replied, "Oh Mommy I'm going to be SO proud of Charlotte when she flies to heaven and becomes an angel. I know she'll get to be the "line leader" angel. I'm just so proud of her."
    We are praying for you to continue to have peace.
    Love, Mary, John, Dylan & Abby

  20. Dear Roger,Rachel and Charlotte,
    Our prayers for you as the miracle of life everlasting is evident in all your love to each other. We are holding you in our hearts. May your beautiful butterfly know the peace and freedom she so richly deserves.
    Love, Jane and Bill

  21. Our Lord Jesus has already prepared a wonderful place for CJ. His arms are ready to receive His special angel. CJ has fulfilled her mission in this world. She has touched so many, many lives! We will miss her and mourn her passing as mortals do. However we should also shout our joy that CJ will no longer suffer...she will be able to read to her hearts content...she will be whole and healthy...she will be an angel! Rachel and Roger you guys amaze us. There are no words to express the way we feel for you. We have never met you but you guys are part of our family! Our hearts cry with you. We hold you close in our prayers! Please know that we are waiting and watching with you. May the peace of the Lord Jesus touch you all!
    Jane Matthews

  22. My little Charlotte,


    my life will be a lot less joyful without you.

    Love, Uncle Terry

  23. Rachel and Roger,

    We love sweet Charlotte so much and she has deeply impacted us all. Her smile and the twinkle in her eye will always be remembered. I don't wish this on anyone, but the two of you have set a great path that shows love, strength, and peace. Charlotte will earn her wings and place with God and may she watch down on all her friends here on earth. My heart breaks for you, but my prayers are sent to provide you with love, hope, and strength.
    Love, Megan, Bobbie, and JosaBella Morton

  24. Sending love and prayers.

  25. Thinking of all of you and praying for peace and a magical eternal life for sweet Charlotte.

  26. Roger and Rachel,

    My grandfather passed away this week...this past year I asked God why he didn't take my grandpa and leave Charlotte to you. It is not really up to us to ask why. Thank you for giving me the gift of looking at death differently. I'm certain it is something you never wanted. I have mourned my grandpa, but he is free!!! I will be happy for Charlotte that she is free, but so very sad for both of you. ...An old italian man who was at my grandpa's bedside said that "you will go when there are no busy curcuits". We have you in our prayers forever and ever.
    Love, Lara, Gino, Nichole, Danielle and Lexi

  27. I'm going to steal someone else's words here: "World, you have no idea what you’ve missed out on!"

    We're sending you long, warm hugs.
    --Kristina & Mila Rhodes

  28. Meryl and Bob McBrideJanuary 2, 2010 at 2:16 PM

    Bob and I continue to send love, hugs and peace for you two and Peanut. Go in peace, Charlotte. Frosty the Snowman and lovely hippos are waiting for you.

  29. The three of you are in our daily thoughts and prayers for a swift uptake of your little angel. Indeed she will be free. "I'm Free" was the theme of my mother's life celebration when she lost her fight with cancer, in the end brain cancer, and it is fitting for anyone who is struck by this most horrible disease. I have a great deal of empathy for what you are going through and so wish that I could hop a flight over to give you all a great big hug and do some reading, unfortunatley I have never skyped and do not have the technical skills to figure out where to start. May this next 2 days go by as smoothly as possible.

    Lots of Love, Dionni Scott and Giovanna Haber

  30. As always - we are surrounding your family in the most heartfelt prayer for comfort - the same comfort that Charlotte will feel in the loving arms of Christ.

  31. To Our Sweetie Pie, Charlotte:

    We'll love and miss you forever and ever and send you eskimo kisses every day. We will always be so thankful that you were placed in our lives - what a huge blessing you've been to all of us and what an honor it is to be your Aunt B and Uncle Not-So-Hairy. We won't say "Good Bye Baby Girl" we'll just say "See you again some day" and Oh, what a BEAUTIFUL day that will be.
    Aunt B & Uncle Not so Hairy

  32. From my heart to all of yours....Love you

  33. I've been following the updates for the past several months now and my heart aches for your family. Charlotte is indeed an angel on earth.

  34. Sending our love and prayers to you all

    Beth Boston & family

  35. Two things Rachel and Roger. Mikayla has been writing songs lately. Today she wrote a beautiful song about a little girl named Lucy with cancer who is not finishing treatment but going to heaven instead to see her best friend. After singing it for me she said the best friend was Charlotte. :) I wonder if "Lucy" was really Mikayla singing for her best friend. Second: Mikayla and I just finished praying again for Charlotte. She asked me if Charlotte was hurting and I was thankful for your post so I could help explain to her that she is not. She also asked if she is on hydration because she isn't drinking and I explained to her what you had posted in the past. Thank you so much for sharing what is going on so that I can help Mikayla sort through this as well. You are amazing people and we are priviledged to have met you and become friends. You are in all of our thoughts constantly. Marty, Deanna, Andrew, Peter, Joshua and Mikayla

  36. Rachel,
    I think back to how strong you were during Charlotte's birth (no drugs, up and walking around right after....I couldn't believe it when I came up to your room!) I'm still amazed by your strength. So many have been touched by CJ and will continue to be touched by her in the future.



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