Friday, December 18, 2009

Mama's Perspective

Roger did a really great job of capturing the events of the day but, of course, I have to add my two cents. It helps that it's after 2 AM and I'm just not ready to sleep. I'm kinda sleepy but I just have a bundle of nervous energy.

Fortunately, Charlotte and Roger are sleeping for me. As Roger mentioned, the latest IV doses of the meds (at 8:30) really relaxed her and put her "out". In fact, she was so relaxed at 12:30, I didn't give her another dose of the morphine or atavan. She's still snoozing and I go in to check on her every once in a while. I actually just changed a very wet diaper which is a good thing, I guess. The child hasn't eaten anything in over 30 hours!

I can't get over the perfect timing of everything. Our trip to Florida was so perfectly orchestrated. She was active, engaged, and enjoying herself up until the end! If our trip had been extended by even a few days, we would be in a totally different situation. Who knows...maybe she just was ready to let this happen to her now that the trip was over. The change in her since last Saturday is unbelievable. The old cocoon analogy is very apt. Her body is closing in on her and she is shutting down. I have never experienced this before (with a family member or a friend) and it is bizarre and fascinating.

I want to express how fabulous the Noah's Children staff have been. They are so matter of fact about the process but at the same time they are full of compassion and caring. I appreciate both. It must be an incredibly difficult job to deal with this on a daily basis and they handle it with such empathy, ease, and kindness. We are extremely grateful.

Seriously planning her memorial service today felt both good (that's the organizer and planner in me) and incredibly surreal (I am planning my daughter's memorial service!!!). At the same time, it was not nearly as SAD as I had anticipated. Further proof that I am ready in many ways for this next step. There is an emotional part of me that keeps losing it at every turn but there is a strong part of me that is ready to let her fly away. When the time comes, we will celebrate her life.

I have no idea how the reading vigil will proceed at this point. There is a very good chance that if you come to read or sing, CJ will be asleep. Remember that is OK. As Roger mentioned, the steady stream of visitors is a good thing. Looks like Richmond will be getting some winter weather in the next 48 hours so if you have signed up to read and find that you can't leave your house, please know that we will understand.

Finally, I want to send out another request from our Denver Network for a point person to help a very special family in the Denver area. I need a liaison who can work with this family (mom, dad, and twins who are 5). The one girl has recurrent Leukemia and the family is in need of fundraising help/donations, meals, and assistance with childcare (among other things). In the spirit of CJSTUF, let's find a way to get all those Denver folks who went to high school with Roger (or other friends/family in the area) to help a family in need that is just like us! If you can help, please email me at You will not need to do all of the work but I want to have one person who can work with the family, determine their greatest needs, and then contact others in the Denver area (via this blog or other means) to help them the best way possible.

Thanks for your love and support.


  1. Roger & Rachel- I think of you all almost on an hourly basis these days. I wake up in the morning and look for new posts. Please keep writing. We are all listening. Your story is breaking my heart and teaching me to love better at the same time. Thank you.

  2. Roger and Rachel,

    This breaks my heart. I wish I had 10% of the strength you have. Charlotte is so precious and beautiful. Bella and I hope we get a chance to read. We were looking at pictures from Bella's 3rd birthday and Charlotte was in most of them. I will drop them off soon for the both of you to have.
    Your always in my thoughts in prayers,

    Megan and JosaBella Morton

  3. I am a stranger to you guys, but come to you through Julia Dollison. I lost a close family member to cancer a while back and recognise a bit of myself in the posts here and there. Just wanted to send you some good thoughts , strength and the knowledge that through your experiences, you are indeed an example to us all of how to love well.

  4. This is Shannon from RM, I am always thinking of you, your family and most importantly CJ. My heart is with you and yours during this time and if there is ever anything that I can do for you, please let me know.

    You are always in my thoughts,


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