Love

Abby is feeling so much better.  I definitely think she was/is laying on the tube that delivers the medicine from the pump to her CSF when she's on her right side.  It pools the medicine and when she moves off of it she gets a larger dose.  It makes so much sense now that I understand what I'm looking for.  The higher dose is helping overall, and the fact that I understand when I lay her on her right side, over the course of an hour she begins to get stiffer and more uncomfortable. 

She needs to gain some weight.  I have a feeling that will go a long way in helping her.  A little weight gives the tube and the achy hips some cushion. 

I turned her over this morning after a good nights sleep and laid beside her.  She stretched her little arm and yawned.  That precious hand came around my neck so sweetly and her sleepy little voice asked "ma?".  That's her way of saying "what's going on?"  I told her about our day as she hugged me.  Then I turned on the food network and went in search of coffee. 

I left her room thinking 'I love her so much!!'  And I just spent a few minutes really enjoying her.  I felt my heart swell at the sweetness of the moment.  That is what I miss most of the time.  Simply loving her.  Fully and uncomplicated.

I always love her, but so often the feelings I'm most aware of are concern, fear, doubt, frustration, guilt, and exhaustion.  Almost always I look at her wondering if she's alright.  Wondering if I'm doing the right things.  Feeling terrible for not wanting to do anything.  Thinking about what she needs and what to do next.  Usually I'm so tired.  I rarely sleep uninterrupted and there are so few days when she feels well.

I forgot what it felt like to feel her hug me and talk to me without "ow" and a discussion of what's wrong today. 

I have to get back to her now, but feel so thankful to start my day with one sweet moment of purity.  One heart, for just a few minutes, filled with nothing but love.