We've had constant guests since the weekend of Easter. My mother-in-law and sister-in-law were standard fixtures that whole week. Then, my sister and mother came to town. Loving friends have brought meals, sat with me, talked to me on the phone for hours, emailed, left messages, texted, sent flowers, brownies, care packages with magazines and chocolate and lounge wear. The outpouring of love we have received from our family and friends and coworkers has buoyed me up.
But, I am finding it to be a false sense of security or optimism. In the early hours of the morning when the night sweats wake me up or when things quiet down in the evenings, I revisit every decision we made during this pregnancy. I think about whether we should have transferred two embryos. I think about whether we should have allowed ourselves the space to mourn the loss of the first baby. I wonder whether we should have been more aggressive about the care I received after the car accident. I wonder whether we should have done the CVS or the amnio. I wonder whether I should have gotten more second opinions on the heart condition diagnosis (cardiomyopathy). I wonder whether we should have sought out a support group for people who had received diagnosis similar to baby Mackenzie. I wonder whether we should have asked about the low amniotic fluid more or insisted that I be put on bedrest or have more regular monitoring. I wonder whether I should have gone into the hospital on Easter Sunday when I felt those weird pains. I wonder whether I should have cut back from work more when I started getting sick all the time. I wonder whether I shouldn't have exercised. I wonder if this loss is some sort of retribution for our mistakes in life. I wonder whether it is a sign from a higher being that we are failures as parents and shouldn't have procreated (rationally, I don't believe this one, but it does creep in). I wonder if I could have eaten more protein and that would have helped. I wonder if I could have been a better advocate for my baby if I had done more research about worst case scenarios or the diagnosis.
There are no answers to these questions and my doctors refuse to even entertain a discussion of the "what ifs" as none of them matter. But, I think this is bullshit. The doctors don't want to entertain "what if" because they don't want a malpractice suit on their hands. The doctors aren't rewarded for helping us to understand this situation.
We got some autopsy results today. They are still studying Mackenzie's heart and thyroid to understand what role, if any, they played in his death. The only definitive results from the autopsy were that Mackenzie was genetically normal, that the placenta was degenerative, and that they don't know why the placenta was degenerative. So, basically, everything that we already knew. It's maddening.
I'm trying to figure out how to deal with my desire to publicly mourn baby Mackenzie. I emailed my close friends the day that we found out he died. I'm generally opposed to substantive announcements of any sort on Facebook, but I did decide to post about our loss. I felt that it was necessary to be forthcoming for a number of reasons. My husband isn't on Facebook and, in his stead, I am friends with many of his work colleagues, former mentees, and friends. It broke my heart to think about him having to answer questions one-by-one the next time he saw these friends about the baby. I think part of the reason that I posted it as well was to remind people blithely bobbing along in their lives that people struggle and people they know struggle. I posted to remind those fuckers that post their positive pee stick before they're even out of their first trimester or who complain about how "hard" their life is dealing with 2 under 2 or 3 under 3 or blah blah blah to not be so oblivious to the luck they have received in life.
I find myself wanting to scream every time I am out in public that my baby died and I want to die and I hate each and every person I talk to. I find myself telling casual acquaintances or random customer service people that my baby is dead. I find myself considering mourning practices previously considered to be too garish and exposed:
I even found a shop on Etsy where a wood carver will make you a baby doll at the exact stage of fetal development at which your baby died. And I wanted one. They're only $100. I want to carry my 22 week 1 day old baby around until he smells and rots. I want to get a custom t-shirt made with a picture of my dead baby. I want to carve a large, cherubic angel baby on my arm with his birth and death date. I want to punch pregnant women in their bellies. I want to both immediately lose all this fucking baby weight and carry it around forever because it is the last tangible, physical evidence I have of his existence on this earth. I want to wear black every day until I die. I refuse to wear make-up or put on anything other than slouchy sweats or curl my hair or look anything remotely like a well-adjusted healthy human being. I want every single person that looks at me to think that
something is wrong with that woman.
I want my baby. I want to hold him and smell his hair and have him suckle on my breast.
In the Pain Olympics, I have always weighed my competitors and acknowledged defeat to few: women who have done 4 or more unsuccessful IVF cycles; women who have had multiple miscarriages and taken years and years to conceive; women who were told that they have premature ovarian failure at a young age and were never able to conceive; women who have had to birth a dead baby after years and years of trying to have a baby; women who have had to birth a dead baby and then never get pregnant again.
It's a crass and rude way to think about suffering. I will tell you that I never really knew how multiple IVF failure would compare to infant loss. I always assumed that infant loss would be worse. With both, your future is uncertain. You don't know if you will ever get to have a child, what that child would look like, when your suffering will end, if you will ever feel like a whole person again. Your body is not your own.
It's the exact fucking same. It hurts. You are mourning. You wonder what your baby would look like. What his or her life would be like. You want to die. You want the world to suffer. You hate living. It's the exact fucking same.
