Wednesday, April 8, 2009

to read, to blog, perchance to forgive oneself

I was telling a friend about my grief at the passing of a child I have never known, and the strange phenomenon I have seen in the world of mommybloggers and readers all moved to tears, posts, and March of Dimes donations by the death of a little girl most of us would never have met in life outside the internet. Somehow we all felt connected, even before this child went into the hospital, by our collective need to know that once here, babies stay here, and once carried by a mother, that baby should be well enough to make out in the big world, no matter how much effort we all have to put into the process. I was so touched by Maddie's mother's words on her blog over the last few months, wherein she discussed how moms of babies who lived precariously in the NICU or who didn't live at all, might want to have a victory baby, or a baby who might help that Mom feel she beat back the demons that roughed her up during her other less favorable experience. She also wrote of the survivor's guilt of having had the child who lived, when other NICU or PICU parents were not so fortunate. These words resonated so much with me, having sought the victory baby even though my own preemie was never really in peril the way so many are. And yet, Maddie was probably thought by many to be sort of out of the woods, having had her bout with RSV already this year, and having made it into toddlerhood. None of us can know what it is in store for our little ones, especially when premature birth compromises little bodies. I didn't really have my second child to have a victory baby but I thought if I read the March of Dimes info, and was monitored very closely, and was a model of motherly virtue that I would have a big strong breastfeeder who landed with her feet on terra firma, who left angel wings entirely elsewhere and planned to stay. Then I got a set of circumstances much more dangerous than those that follow a baby with Claire's nearly robust three pounds and one ounce. Victory baby has a lifelong genetic disorder that will cause organ failure or death in the event of any fasting, and so far appears to have at least some lingering neuromuscular injury from her metabolic crisis two days after her birth, meaning we start physical therapy this week. I didn't get victory, instead I need the March of Dimes even more than ever, and so do all of you who don't live in states with full spectrum newborn screening. I don't feel quite so guilty that my preemie was always able to breathe on her own, now that Victory baby can't miss a meal or use her right hand equally with her left. None of this is easy or simple, and truly, no one ever told us parenting would be, but damn! Some of this stuff hurts so much. I am getting a glimpse of what I will face in getting Hannah her necessary therapy, and luckily, I am detail oriented, assertive and I have private insurance. I periodically have to sob when I say out loud "Hannah needs some physical therapy to get her hand going . . ." and I wonder what will be the outcome in six months, a year, or two. When I am with my girls I want to express confidence in their abilities, not fear of their failings, or their lack of physical perfection. Somewhere, I want to tell someone about the hurty part, the scary part, the guilty self doubting part where I wonder if it was the extra cups of coffee, or that I failed to sing Hannah the right song when she was in the hospital so now she has weak muscles, or whatever weird crap I deal myself. Even though my big brain knows not to beat myself up, I will find a way, and sharing the thoughts with others helps me not be quite so effective with self doubt. I find it so moving to read the words other moms, like Maddie's, choose to express their feelings on these rocky roads of mothering, especially when they feel such joy at the high points. My friend told me I shouldn't be a mommy blogger because every time someone criticises me I will lapse into self doubt and self criticism about every choice I've ever made, and inevitably I'll get negative responses from someone who will tell me I got it all wrong. Right now, I'll take that chance, because as some of you say, blogging is cheaper than therapy, and I get to read your stories too. I do find a lot of laughter on the blogs, and the tales of woe that put everything else in one's own life back in perspective, and the bit that happens in between the edges is really the most interesting of all. Thank you!

1 comment:

  1. Hi Ginger,
    Thank you so much for your kind words on my blog. This is why the internet is amazing--we can connect with each other even though we have never meant. Your children are beautiful and I am wishing you the best in your own struggle to balance everything and maintain some kind of sanity. It helps to know I'm not the only one. :)
    Take care,