Wednesday, August 01, 2012

 So...tomorrow is a big day. I've been avoiding the thought, pretending it's no big deal. But as I watched my tall, strapping, handsome sons wrestling around and bouncing and laughing out on their hit me. My son, my first born twin, my darling child with all the fucked up health issues, will be under the knife again tomorrow. Almost exactly 12 years from the day they came home from the hospital. Almost exactly 12 years from the day the first neurosurgeon placed the VP shunt that they are finally replacing tomorrow. And I know it's a routine procedure. But it's still brain surgery. And there is still that chance...however small...that the boy I know will be changed forever. Just writing that makes me feel better, because my gut says he will be just as funny and cantankerous and wonderful as he is today. But. I cried over the sink full of dishes anyway.
And here is the essay I wrote 7 years ago, about the whole thing.

                   The Weight of Unheard Fears

It worries me. So much so, that I don’t allow myself to think about it often.  I know that this has the power to cripple me if I focus on it.  So I don’t.  One beautiful, matched set of baby boys was granted to me.  My body made a genetic anomaly, as the Twins Research Study pamphlet indicated.  I had never thought of it that way, but I suppose it is correct.  Anomaly or no, they were perfect to me.  And they still are. Beautiful, sweet babies, ruthlessly inquisitive preschoolers—most days lately it feels like I’m on “Larry King Live”, being drilled with hard hitting questions like machine-gun fire.  “What is lava? Will it burn you? Is it always orange? Do all mountains come from volcanoes?”, “Where do tornadoes come from?”, “How old is Grandpa? 70? That’s old…he must be really tall!”  They are amazing and wonderful in all of the ways a mother sees her children.

            My worry, however, comes from a condition that is common in premature babies, but causes severe brain damage in some cases.  I don’t know what the statistics are, but I do know that so far we are counted among the lucky.  The little one who needed brain surgery at 6 weeks old is as much like his brother as any twin would be. 

            I chose two names for them, and when they had filled my womb so tightly that it seemed they wouldn’t change position again, I slapped a name on each little jumble of limbs.  The one who seemed eager to crawl right on out of me would be Oliver, the first-born—the “oldest”, as silly as that is.  The one nestled into my ribs would be Max.  On the weekend of my 33rd week of pregnancy (7 weeks shy of a normal delivery date, 3 weeks before the date my doctor and I had chosen for doing a scheduled birth) my husband went camping with his five brothers.  Out of cell phone range, but with strict orders to check in from a payphone near their wilderness location as often as possible.  On their second day of family fun, two of the brothers got into a terrible argument, and my mild-natured husband decided to excuse himself.  He headed home to go golfing instead of listening to the foolishness of nearly 3 decades of rivalry.  He stopped in to get his golf clubs, and I sent him on his way with a chuckle—a family with six boys is understandably a bit of a powder keg on occasion.  Just as he was about to tee off, he got my phone call: the water had broken, I needed him to come pick me up and take me to the hospital.  I’m sure most people have watched enough TV to have an idea of that whole scene, but I will add my acquiescence that contractions are no fun and rides to the hospital are too long.  There was much swearing, though none of it directed at my husband—that part of the delivery cliché has always confused me.  As far as I know, it takes two people to make a baby. After the seemingly slow-motion-afflicted nurses finally prepped me for the epidural, it was like someone had flipped a switch: the sailor in possession of my mouth vanished and my manners kicked in: apologies were doled out like cigars and I noticed that my husband was in the room—and was actually glad for it.

            The baby in position to deliver first was deemed to be in distress, so they rushed me into the operating room for a C-section.  I can remember feeling very numb at that point—physically, from the anesthesia, but mostly emotional numbness.  I remember lying there, hearing so many doctors and nurses around me, the peculiarly hospital-like smells and the bright lights.  I felt like I was at the end of a long hallway, with my uterus and the medical professionals at the other end.  A male voice saying, “This one’s not breathing,” has echoed through my mind many times since then, always followed by my gratefulness that the problem was soon corrected.  That was Oliver, and he was whisked away to the respirators.  A few minutes later I heard the sweet, fragile—but somehow very pissed off-sounding—cry of the second twin, Maxwell.  I still couldn’t see anyone else, but it felt very quiet around me; the action had clearly moved elsewhere.  My husband went with Oliver to the Newborn Intensive Care Unit and after a timeless number of minutes alone in that room someone brought my second baby to me and let me have a glimpse—no touching yet, no holding.  His little red face was that of a stranger, hooded in a hospital-provided receiving blanket.  I was still in a cloud of drugs and shock, and they let me sleep until sometime the next day, when I was plunked into a wheelchair and taken to the floor with the babies.  The whole hospital stay is a blur to me, but I remember that first visit very clearly.  That was my first meeting with Oliver, and my first chance to “hold” either of them.  They looked like aliens, with monitors and tubes poking out of them in every direction, their tiny hands moving like tired butterflies around their faces, their spindly little legs poking out of giant preemie-sized diapers.  I remember my confusion over which one to hold first, and the horrible feelings of inadequacy at all that lay ahead—knowing that I would have to split my time between two little creatures who each needed me every minute of the day was daunting, but we made it.  They learned to share from day one, and I discovered that I am a champion multi-tasker.  Before becoming the mother of twins, I thought the scope of my multi-tasking talents was limited to talking on the phone while baking a pie, or keeping an ear on the TV and an eye on my book.

            They were healthy little buggers and came home after just a few weeks of extra nutrition and careful monitoring of hearts and lungs.  We were ready for them—physically, at least, and I had recovered from the surgery by then.  Looking back, I marvel at how tiny they were.  The two of them, lying crossways in a single crib.  It looked enormous, and its match waited patiently in the nursery for the day we would finally believe that they could sleep through a night more than 3 feet away from us…it took five months, just for the record.  

During their first week home, I noticed that Oliver’s head was larger than Max’s.  It started out as a subtle difference but seemed to become more noticeable as the next weeks passed.  My sister-in-law is a nurse, so when she came by to see us, I asked her what she thought of his head.  She agreed that there was a difference and suggested that it might be hydrocephalus.  We took him to see the pediatrician the next day, and tests were ordered.  Her guess was right, and a pediatric neurosurgeon was lined up for the following day. 

Hydrocephalus is often referred to as “water on the brain”, although that is a misnomer.  Scientifically speaking, it is a condition where the spinal fluid isn’t draining properly from the ventricles of the brain, where it originates.  This causes brain damage in many babies but we were lucky.  More than lucky.  More than blessed, more than spared.  My superstitious nature makes me afraid to even talk about how it is that his run-in with nature was so mild, by comparison.

I didn’t call my parents, I didn’t even call that helpful sister-in-law.  I don’t think I took a breath until sometime in the afternoon when I had confirmation that my tiny little baby was safe again.  I didn’t even know him yet, but I knew that losing him would have ruined us all. 

            The surgery that saved his life is fairly low risk, but the tube is permanent, and will continue to drain the fluids that his ventricles are stubbornly hoarding.  He will not be able to play football or hockey—contact sports are out—but they say baseball, basketball and his father’s favorite, golf, are all acceptable.  I keep telling myself that he’ll be able to live a normal life, because so far he has. He developed an allergy to peanuts, and sometimes I wonder if this is the way I am reminded that he is more fragile than his brother.  It is a constant concern, to keep peanuts away from him, whereas the shunt is fairly easy to forget about.  It is a way to keep us alert, to remind us that he is special.  It is a much more visceral problem, if no less life-threatening. He knows that he is allergic, and he knows to ask before eating something unfamiliar.  I am armed with an epi-pen (epinephrine) and that gives me a sense of control.  If he experiences a head trauma, that life-saving shunt could become our worst nightmare.

Most days I don’t think about it.  Most days I run around like a one-armed paper hanger, trying to keep up with the messes and the questions of two extremely active five year old boys.  I shrug and say it’s because I’m tough, and I don’t like to wallow in worry.  This is the biggest, fattest, most puss-filled lie of them all.  While it’s true that I am tough, and truer still that I don’t like to wallow—in anything—the real reason that I don’t think about it is because I can’t.  I purposely shove it out of my mind and into a dark corner of some far away attic because the “what if”s have the power to bind me.  Imagining what our lives would be like with Max as the constant reminder of what we lost would be like a cruel joke.  They look the same, their gestures and mannerisms are the same, even if their personalities are so different it makes my head spin.  Where one loves order and numbers, the other loves imitating accents and describing dreams.  They are two halves of a whole, in a way that I never realized twins would be.  Their entire sense of self has grown from the other, has been shaped by the other.  I know that they are separate people, but they are only just learning that. To have that experience derailed would be another sort of tragedy.

I have no proof, but as a parent, I have attempted to blame myself.  This is counter-productive, but I’ll keep it tucked away until I need it.  Until something goes wrong.  It’s easy to keep that particular worry suppressed while everything is calm and cool and sane.  But if our worst fears come to be, then I will no doubt waste some energy dwelling on what I could have done differently to prevent the infection which most likely caused his hydrocephalus.  The doctor told me the infection wasn’t my fault, that it’s just something that happens during pregnancies sometimes.  But I am fairly certain that I could convince myself otherwise if I needed to.  It’s better than having no one to blame.  The hurricane-sized ball of fury will have to be directed somewhere…

I must force myself to acknowledge these possibilities, at least enough to further cherish these precious days with my sons, these days of their equality.  I hope (with all that I am) for that qualification to never change.  But I know that it might.  I know that any parent would share my worry—to have a child lost (either in part or in whole) is the greatest pain a heart-driven human can know.  It’s something that is against nature, against the grain of the circle of life.  Just writing these words, I feel the blue demons of fear churning through my middle.  I can see his big eyes and his still-spindly little legs, I can hear his jokes and his laughter.  I want to pad silently up the stairs and go slip into his bed and hold his little warm self close—and tell him he’s safe, so that I will hear the words and believe them. 


Queenmatrai said...

I'm speechless but God Bless You!

Larry Evinger said...

Hello, I hope you & your sons are doing well... I came across your blog while doing my nightly research. My name is Larry, I will be 40 in April & I have congenital hydrocephalus ... If you are interested, there are support groups on the web for you & your family.. Many of us can be found on FaceBook..

Bored Housewife said...

Thank you so much, Larry! It does help to know you're not alone in this, doesn't it? And perhaps if I had been connected with a community I would have discovered his post-op infection sooner...and maybe I can offer someone else the benefit of what I've learned recently.
Wishing you well--