I am a lawyer, my husband is a pediatrician, and our daughter was two years old when I suddenly went into labor at 25 weeks. Before my sons’ birth, my husband and I would have occasional conversations about the cost/benefit analysis of "resource allocation" to NICU babies when there are so many “normal" children who are without heath care at all. We were not assholes, but rather trying to investigate the medical and societal ethics of these tough questions.
Four months in the NICU, four years of intensive occupational, physical, and speech therapy, and three more years of worry later, our little guys are healthy, curious, vivacious first graders, who love to read, play Legos, ride their skateboards, and bug their big sister.
The birth of my children took all of my greatest fears and hopes, and distilled them into a crystalline terror that I hope never to experience again. And it made me fearless.
I call it the greatest gift you wouldn't give your worst enemy.
One of the hardest parts, I thought, was the lack of societal context for the experience. There is no hallmark card for this one. It's not congratulations and it's not sympathy. It is a birth, but it is also a death: the death of one's hopes for a full-term pregnancy and the fuzzy filtered baby pictures in the mothering magazines. It is the "why me" baying at the moon after we eschewed wine and sushi and did our part to control what is intrinsically out of our control. It is the terror of facing a life so different from the one for which we had dreamed and planned - and the strange prospect that maybe that is a really good thing.
It is realizing (for me), that I am a much, much, MUCH more open, kind, non-judgmental, and understanding person than I was before the birth of my children - soooooo much better - and that there is so much more room for connection and experience and richness when we let go of fear. And, of course, mix that all up with the crushing guilt of "failing" at pregnancy and inflicting all of this on a healthy toddler and spouse.
These are all some of the emotions (oh, there were so many more) that I experienced. On top of that, some very close friends and family disappeared when we needed them most, because they just didn't know what to do or say. Others retreated behind platitudes ("this is God's will," "they are such a BLESSING!," "what miracles!") that never resonated with the depths of emotion that we experienced. But we also had amazing friends and family, who taught us the deep difference between sympathy and empathy.
I have read that the extreme premature birth of a child (or two in our case) has the same divorce rate as the death of a child, and only slightly lower rates of PTSD and depression. My husband and I, who have a rock solid marriage, had times when we wondered if we would survive it together. Some days, especially in the first years, I got by on a healthy dose of gallows humor, red wine, and sheer force of will.
Take this for what it is worth:
You are not alone.
-Banks Staples Pecht
More of Banks Staples Pecht’s writing: http://www.brainchildmag.com/2015/04/the-loveliness-of-ladybugs/