06 September 2012
you may have heard that we are expecting baby #3 in these parts. with three, you think that you know what's what. you have been there, done that, and done it again. you are happy, thrilled even, but then again there are those two already-here kids, and school and work and bathtimes and bedtimes and laughing and arguing and all the rest. the camera fills up with everyday pictures--collections of flowers and bottlecaps. you gestate in the background, avoid alcohol and sushi, maybe make time for some extra exercise (ha), and then lo and behold it is time for the mid-pregnancy ultrasound. time for putting a grainy black-and-white profile, maybe a gender, to the belly flutters and half-wrought ideas that have formed your experience of this baby-to-be thus far. you'll plan to celebrate a bit--relish the moment--then go back to life-in-progress, life-as-normal, until the baby comes and makes you a family of 5 instead of 4.
and then you hear that something is wrong.
this baby of ours will be born with a heart defect. Most folks walk around with four chambers in their hearts, but this baby has only 3--her left ventricle did not develop, and wouldn't you know, you really do need that one. We'll probably never know what caused the defect ("a terrible fluke," one doctor said), but, thank God, they do have a way to treat it. A complicated, scary, so-crazy-it-just-might-work staged reconstruction procedure that will require three open-heart surgeries, starting just a few days after the baby is born--but a treatment nonetheless.
I've learned so many terms in the past few weeks: HLHS, DORV. Norwood, Glenn, Fontan. Stenosis, cyanosis, shunt, neurocognitive, catherization, NG intubation, MRI, echocardiogram, oximetry. Surgical outcome.
But the word I keep coming back to, the one I've been turning over and over in my mind ever since this news hit, is "normal."
It came up in the conference room where they seated us opposite physicians, social workers, and hospital staff to give us the full diagnosis and discuss our options: "...compared to normal human circulation..." "...mostly-normal activity levels..." "...intelligence typically within the normal range..." "...a specialist will help normalize the hospital for the older siblings..." "...what we normally see after these operations...". I heard myself using it over and over again as I broke the news to family and friends. "They say these kids are very normal after the procedures are done." "We'll have a tough couple of years, but then we're hoping to return to normal life." "We are lucky to have so much advance warning; it isn't normal with most medical emergencies." Couched in qualifiers, used in contrast, eagerly wished for, it has become the beat within a litany of hopes and fears and bewilderments. Our world is not the same, but maybe if we say it enough, in whispers and conversations and moutaintop hollers, we can somehow find our way--back to normal.
It's something of a fiction, I know. Things will get easier over time, and the surgeries will make worlds of difference, but life will never be completely "normal" for this little person who will go out into the world with only half a heart--nor for us as parents. But what I keep coming back to are not the specters of daily medication, curtailed athletic participation, or future transplant needs. It's the ways this new experience highlights what we all know, but hardly ever admit: there is no normal. No guarantees. Not for other families facing heart defects, or cancer, or aging parents, or AIDS, or tragic accidents (many without the blessings of insurance and community support we are so privileged to enjoy). Not for people who lose their jobs, their spouses, their homes, or their faith. Not for those living in the midst of war and poverty. Not for the person going about their day until a flat tire hits and makes them late for school pickup. Not for us, healthy baby or no. I'm coming to realize that the expectations I need to let go of for this child--from school performance to energy level to the luxury of taking their presence for granted--are ones I need to release for all of my children, all the people I love.
Because, of course, the real fiction is that normal is something we would even want. Natural, yes, and everyday, rhythmic, routine... those are all things we can welcome. But what we're really living for--what I am, anyhow--is the extra-ordinary, difficulties and all. And so I am thankful. For the discoveries we'll make about ourselves and each other as spouses, parents, children, friends. For the humbling opportunity to need help, and accept it. For the chance to show optimism in the face of adversity. For the glimpses of beauty I will now notice and try hard, hard, hard not to ignore. For this child with the heart of a warrior.
This "one wild and precious life," Mary Oliver so famously called it--why would we ask for it to be normal?
My own heart full of gratitude and wonder for all the not-normal to come, we set out.