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, even offer suggestions, etc.  Heck, I even have my own binder on Evie where I track all the data that a nurse or doctor might 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.  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 . . . There are people in my family who claim to be "in tune" with Evie in a metaphysical sense. They 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 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 others keep 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!