Wednesday, March 19, 2014

My Best

There's this perception out there that once you're pregnant, in particular when you're pregnant with your rainbow baby, you're supposed to be carefree and happy all of the time.  I'd say most of the time, I am happy - I am joyous, I am glowing, I am so happy that people should envy me.  Still, there is a part of me that is waiting, even in my joy, for that other shoe to drop.

Speaking of shoes, Noelle chewed the heel of one shoe belonging to one of only two pairs that I wear to the office these days.  I swatted her with the shoe and locked her in a bedroom before I swatted her again and until I regretted it.  I placed the shoe, and its mate, near the trash can to be thrown out tomorrow now that the one has been rendered unwearable.  I don't understand why she has to be so difficult and unruly, and why she can't be more like Gideon, whose disabilities have limited him and informed his temperament enough that I rarely get upset with him.

Someone told me recently, "I think you're angry at Rocco for surviving."  That's the stupidest fucking thing I ever heard.  I'm not angry at Rocco.  I just don't know how to believe, and how to accept, that Rocco will be okay.  I know how to deal with a terminally ill child, just like I know how to deal with a dog with hip dysplasia.  I am not quite sure how to deal with Rocco and Noelle, though I love them both deeply.  They need something completely different from me than either Gabriel or Gideon need.

I'll be the first to admit that I can be a rather noncompliant patient.  After a recent OB appointment I became frustrated with continually being addressed as high risk, when no one can tell me what I am at risk for, and frustrated with taking time out of my day for appointments that I feel are generally unproductive and where I am treated as just another patient.  I don't really understand how I can be at once high risk, and still just another uterus.  Although my doctor asked me to schedule my next appointment for two to three weeks from then, I pushed it out to three and a half, unwilling to go out of my way anymore to have my own concerns ignored while being scolded for things that I don't think I'm doing wrong.  When I went to what I thought was a safe place to vent, I was told, in addition to having been told that I am angry at Rocco for surviving, "As a woman struggling with infertility, I want to remind you how precious the life you are carrying really is."

What the fuck am I supposed to say to that?  "I'll see your infertility, and raise you two dead babies."  Grief isn't a competition, and I'm tired of being told how I am supposed to feel.  I am tired of being told that my feelings are just hormones.  I'm tired of being assessed as though I am a case study.  I feel the way I feel because it's the way I feel, and those feelings are the product of hormones and tragedy and happiness always tempered by the fear that at any moment the bottom could be pulled right out from under me and I might find myself falling and flailing once again.  I thank God I don't know the grief of infertility, I truly do.  Even upon Gabriel's diagnosis I was thankful to have him at all, even with anencephaly.  Still, my child that I was blessed to conceive and carry died in my arms as I watched helplessly, and that changed my whole world and I am constantly learning how to approach my world in the light of that experience.  Maybe I'm not doing what others think they would do, but I'm doing the best I can.

I am tired of pretending like I am perfectly okay with sharing my body with a baby who may or may not be okay, and making decisions based on the assumption that child will be okay, when I know that even making the right decisions couldn't and didn't save my son.  Once a week, I leave the office at 5:00 pm to run home, change my clothes, pet the dogs, then head to the bar for my closing shift which begins at 6:00 pm.  Tuesdays are LONG days.  No one MAKES me work at the bar once a week, but I love it, and besides, I've been tucking my paychecks away for Rocco's education fund.  Giving up Tuesdays is not what I want to do right now.

And once a week, during that Tuesday closing shift, I have a Red Bull.  I think about that Red Bull all day on Tuesdays, until I can get to the bar to crack it open.  And more often than not, someone will have something to say about my choice.

"You shouldn't be drinking that in your condition."  Perhaps the admonition would carry more weight if it weren't being delivered by someone pickling their own liver.  Perhaps it would mean more if it were delivered by someone who's walked in my shoes.  Except the women who have walked in my shoes wouldn't say something like that, because they know my grief and they know my fear and they know my hope, and they know that I love my baby and care for my baby and will take care of my baby better than anyone else on this planet.  I am human, and I am traumatized, and I am terrified, but I am also brimming with love for my child.  Maybe I don't show it the way others expect me to.  I show it the way I know how.

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