Thinking vs. Feeling

Here is a picture of me holding Evie earlier this week:  

On the left is Chet, my father-in-law.  On the right is my dad Phil.  When I need support with my feelings, I go to Chet, because he is a master of balance and spiritual energy.  When I need support with my thinking I go to my dad because he is a master of intellectualism and critical thinking.  This photo is a perfect metaphor for my struggle to balance feelings and thoughts about Evie.

Thinking is an Escape from Feeling

Sometimes it seems like Evie is my patient, and not my daughter.  I constantly meet with nurses and doctors to get updates, ask questions, offer suggestions, etc.  Heck, I even have my own chart on Evie where I track almost all the same data that the doctors track! Today I spent half the day researching brain anatomy and possible effects of CMV on the brain.  I learned approximately 50 new words in a matter of three hours- words like "white matter," "glial cells," "periventricular calcification," and so on. I wanted to be prepared for our conversation tomorrow about Evie's MRI results.

But maybe all this thinking, all this time I spend in my head, is a defense against feeling?  If I let myself go into feeling, or spend time in my heart, I know the feelings that come up will be anxiety, sadness, grief, guilt, and even terror at the situation.  For now, thinking must be safer.  Thinking might even be helpful because it could lead to better medical care for Evie, right?

Guilt

Even by spending time thinking instead of feeling, I cannot escape guilt.  This guilt is really complex, and starts with regret about decisions I made before Evie was born.  Why didn't I say something sooner when I wasn't feeling much movement?  Why didn't I do a better job of protecting myself from germs/infection? I even wonder whether our decision to get pregnant so soon after a miscarriage affected Evie's health- Aargh!  Those thoughts can drive a person CRAZY!  (I am no stranger to those thoughts though, because I still have lots of thoughts like that about Kaylie, my friend who committed suicide 3 years ago.)  This part of my guilt will hopefully subside over time. . .

Besides regret about decisions I made, I also feel guilty about all the time I spend in my head instead of in my heart . . . I know a lot of people who are really in tune with Evie and feel a deep connection with her being.  I am her own mother, and I do not feel things that way.  Whether it's a defense mechanism or whether it's just how I am wired, I am having trouble bonding with my baby girl.  I know that deep down I love Evie intensely, but for now the only way I can express that love is by thinking critically about her disease and supporting her medical care as best I can.  I am praying that once I hold her at my breast and get to be alone with her for hours at a time I will feel that connection with her being that everybody else keeps talking about.  Maybe then this guilt about thinking vs. feeling will go away too.

(p.s.) I should mention that immediately after this visit by both grandpas, Evie's liver counts got way better!!  I know this was mostly the result of taking her off ganciclovere, but I think grandpa love helped too!!

(p.p.s.) Kabir got to hold Evie yesterday for the first time!  She was SOO comfy and fell asleep right away!