Tuesday, January 5, 2010

Ch-ch-ch-ch-changes...

No, that's not my teeth chattering, although it is QUITE cold. It is definitely winter here in Virginia as I can see it is rather chilly throughout most of the country. These are days when I am grateful for my fireplace and a fairly well insulated home. We were blessed with a delivery of wood from Noah's Children! I can't stop talking about what a wonderful organization they are! They have gifted us with not only their medical and counseling expertise but bring frequent gifts of fresh bread, restaurant gift certificates for very important dates, the occasional hazelnut latte, and now a whole truckload of firewood! Amazing! We'll say it again: if you need a worthy cause to give your time, energy, or money too (besides CJSTUF), consider Noah's Children.

Charlotte is still here. Dr. Archuleta came to see her today and his latest assessment is that she is slowly changing. There is definite progression in her breathing, color, skin tone, etc. It's just a slow process and she keeps hanging on. He is hypothesizing that it should be anywhere in the next 24-48 hours. That would fit in with the 7-10 day window since her last bit of "substantial" nutrition. We did tell him that if he was wrong, after the 48 hour window passed, we are going on a trip to Aruba and HE can stay here with her till she finally decides to get those butterfly wings out.

We have tried every possible permutation in this vigil. We have sat at her bedside and held her, we have sung to her, we have given her quiet, we have left the room (and even the house), we have told her repeatedly that WE are ready for her to fly. She will go when she goes and there's no changing that. I feel that our life is at an odd standstill. I find it hard to do so many things, not out of grief but just because I feel like I can't move on in many ways until she finally passes.

Roger and I did go out briefly (together) yesterday and it was refreshing. Kathy L. and Kolbey stayed with her while we went out to lunch and ran a few errands. It was so nice to be out of the house and it really energized me. We had planned a date for earlier last week and it got delayed when her condition seemed to change and we thought we were on the verge. I'm glad we didn't procrastinate much longer as I was going a bit stir crazy.

I apologize to anyone who had hoped to read to Charlotte and did not get their chance. We decided to put the reading vigil on indefinite hold and I think that at this point it is probably finished. While I loved having the energy in the house, the contrasting quiet and relative lack of visitors has been refreshing in its own right. I think that the tone set in the house has been perfect in each case. Now is a time for more quiet. Thank you to everyone who was able to come (or Skype) in and thanks to those who continue to leave us notes of encouragement on Facebook or via email. We appreciate the constant "vigil" that has been created in support of us as well.

Plans are coming together for her memorial service and I will share some of that information with you now (especially for those of you that are planners). The service is scheduled for Saturday January 16th at noon at Blackwell Auditorium on the Randolph-Macon College Campus in Ashland. Rev. Ed Tracy (from St. James the Less) and Rev. Kent Rahm (from Trinity Episcopal in Fredericksburg) will be officiating. There will be a reception to follow at Duncan Memorial church (next door). Kim Thies and Meredith Hayes are heading up the organization of the reception. If you would like to help in any way, please contact me and I will give you their contact information. (I don't want to publish their phone numbers on our blog directly). They have spoken with us and know what our wishes are in terms of the reception, etc. and we are letting them run with it.

As a reminder, the service and reception will be as kid friendly as possible. We will have children's activities and space for the kids (art activities, etc.) as well as a few people who have already volunteered to watch kids during the service if needed. The service will hopefully have a very celebratory tone to it so please feel free to bring children if you are comfortable with that. Also, the dress code is PINK and/or PURPLE (no somber black allowed).

For anyone who is out of town or cannot make it, we are hoping to have the service videotaped so we will make DVD copies available as soon as possible. We hope that anyone who wants to can attend but we also understand that not everyone will be able to make it. Some of you have already said your goodbyes to dear Charlotte and your efforts have been recognized.

I think that is all the news I have to report. Thank you, dear friends and family, for your constant vigil. We love you!

13 comments:

  1. She is a strong little lady....a trait that she no doubt gets from her parents. Prayers continue....Melissa

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  2. Frosty the Hutt isn't melted yet, is he? ;)

    I'm a little sad that little JJ just grew out of his "Real Men Wear Pink" onesie... but I'll think of something else!

    God bless you and the staff at Noah's Children.

    -Kristen Stone

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  3. Rachel: I just sent an email to let you know that Noah's Children and Mary Poppins will be collaborating on a permanent basis. Lots of details, rules, and regs to work out. i will let everyone know once we have a gameplan and strategy. So, my sweet Charlotte, because of your generous and strong parents who allowed us "in", we ARE paying-it-forward in your spirit.

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  4. I heard about you thru my sister...Deb...shortly after she did a photo shoot for you. :) You are such a beautiful family and I think about you every day. I love the butterfly story and will think of her and smile every time I see one now. I'm praying for you...God Bless! :) Chris

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  5. We can't stop thinking about you guys. Sending nothing but love and smiles.

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  6. Enjoy each beautiful moment...they are priceless. Thoughts and prayers with all of you. Love to you! Anna

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  7. God bless your family, you remains in our thoughts and prayers.
    Love the DeLuke Family

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  8. You were in our hearts at the LPP reunion. We are singing for CJ and you.

    Love, ellen

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  9. We just want you to know that you really are in our thoughts and prayers. We pray that you feel the peace of God now and in the future. You are a special family and dear Charlotte is so very precious.

    -Keith and Julie Sherrill

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  10. Precious little Charlotte, our Princess forever.
    Matthew 19:14
    Jesus said, "Let the children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."
    I know in my heart that her imprint in our hearts will live forever. Thanks to God for the gift of eternal life. Thank you Rachel and Roger for touching us in such a deep profound way. God bless you always.

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  11. May God's word give you His abundant comfort.
    Psalm 4:8
    In peace I will lie down and sleep, for you alone, O Lord, will keep me safe.
    Psalm 18:30
    God's way is perfect. All the Lord's promises prove true. He is a shield for all who look to him for protection.
    Psalm 91:11
    He will order his angels to protect you wherever you go.
    Psalm 121:7,8
    The Lord... watches over your life. The Lord keeps watch over you as you come and go, both now and forever.
    Proverbs 18:10
    The name of the Lord is a strong fortress, the godly run to him and are safe.
    2 Thessalonians 3:3
    The Lord is faithful; he will strengthen you and guard you from difficulty.
    Matthew 5:9
    God blesses those who work for peace, for they will be called the children of God.
    May our Lord Jesus Christ touch your hearts with His Peace and Grace always.

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  12. The pink and purple is so beautiful. My dad went to a celebration of life for the daughter of one of his co-workers...he marveled that everyone was wearing white, and it was truly a celebration of her life. When he passed away, my mom and I both wore green (his favorite color) and white outfits. It just seemed so fitting. Not sure why I shared that, but somehow it just makes my heart smile you guys are truly celebrating your beautiful little girl's life! Keeping you in my prayers.

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