Tuesday, June 1, 2010

Tuesday June 1, 2010

Anaya has been doing really great in some ways lately. The new medicine called scopalamine, which is to dry up extra saliva and mucous, is really working. There have been fewer choking episodes. I haven't had to suction her in almost a week. This is fantastic. The side effect of the medicine is that she is a bit extra drowsy, but it seems to be wearing down a bit. We were told that the drowsiness will eventually cease.

One of the things that concerns me about Anaya lately is her breathing pattern. As she is falling asleep she has gaps or apneas in her breathing which last sometimes 30 seconds. Eventually, as she falls into a deeper sleep, her breath settles into a more regular pattern. I just get the shivers every time she stops breathing. Usually I give her little chest a rub and encourage her to take a deep breath, which she does quite loudly and sometimes starts crying. I think the feeling of anxiety that she gets when she doesn't quite get enough oxygen really frightens her.

Our Nurse, Joanne, has been with us now for 6 weeks. She is an amazing blessing and I can't imagine this journey without her. She has a very grounded and aware presence. She is so patient and gentle with Anaya. I trust her with Anaya's life. I trust her with Anaya's death.

You may ask "What does she mean when she says she trusts her with Anaya's death?" What I mean is that if I were not present and Anaya were to pass away in Joannes presence I would not feel guilty. I would know that she was well taken care of and properly guided gently through the door of our transition into the unknown. Joanne is spiritual in the same way that I am. Her soul is rooted in her body and when you look into her eyes you know that she's "All here". I have seldom met someone who is so consistantly present and true to herself. She always communicates her viewpoint very clearly, and gets me to re-evaluate my thinking and helps me stay grounded into the moment.

We are so blessed to have her.

Yesterday was my eldest daughters birthday, she turned 8. She had a really great day. She seems very happy. As she kissed Anaya goodnight, I sang her happy birthday. It was a moment for the three of us. Kissing Anaya is like putting your lips to the softest cheek in the world. She is so angelic and it seems to radiate outwards in her beauty and softness. The golden hair on her head is soft like strands of silk. Her eyelashes are long and curly, even her scent is sweet and ethereal. MMMmmm smell of baby.

When Solara kissed Anaya goodnight I couldn't help but think that Anaya's presence on Solara's birthday was one of her most cherished gifts.


  1. She does have the softest cheeks in the world!

    Thank you for letting me have a chance to give her snuggles and love.

    And, even though I am not walking your path, I feel that I understand in my heart what you mean about Joanne, and trusting her. With life and death. To me, that is an honor to bestow on another human. A mantle that can't be worn lightly, but still needs to be worn.

    Your words, as always, are a source of inspiration to read.

  2. This picture of Anaya is beautiful. I love it. What an angel.


  3. she is beautiful.


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