Boy-o was born almost 2 years ago.  On the day my first son came into the world, I was exhausted, thrilled, mildly disappointed about my failed homebirth, but mostly just relieved it was done, he was here, and everything was ok. The only problem was a mild heart murmur, no big deal.

A few hours later, my world was ripped out from under me, as my son was unceremoniously and in a near panic, taken from my arms and rushed to the NICU.  There was nothing wrong with him that I could see or that I could sense.  But the verdict had come in from the tests they ran based on the heart murmur - my little boy had aortic stenosis.  He could die any minute.

The next 48 hours were sheer hell.  I can only remember them in flashes.  Okaying the use of the pacifier - something I had expressly forbidden on our birth plan - because he wasn’t allowed to nurse or eat and it was nearly impossible to hold him through all the wires, and I wanted him to have something comforting.  My husband bringing me a blanket with a big yellow stain on it - urine, probably - that our son had been wrapped in, so I could smell him while I pumped and while I slept, two floors away from the baby I swore would never leave my hospital room without me.  Kind nurses giving me morphine shots so that I could handle the pain of traveling via wheelchair to see him between pumping sessions.  Wishing the morphine would dull more than the pain.  My mother, stressed as we all were, snapping at Queenie for some imagined slight, and in my delirium swearing to myself that when this was all over my mom wouldn’t be allowed to take care of Queenie anymore.  Signing papers that I understood that the surgery designed to save his life, could kill him.

 We got through those 48 hours. We learned that this was only the beginning of this journey. That someday Boy-o will need a valve transplant.  We got through the following month, when all the trauma, a case of mastitis, thrush, and a missed case of tongue tie meant the end of nursing, and the start of pumping that would last seven long months.  We got through a car accident when Boy-o was only 4 months old, kept safe in his car seat.  We got through my brother’s death a month later, from an aortic aneurysm.  We got through the news that while his aortic valve temporary repair was holding up, his mitral valve had started to go downhill.  We got through his first birthday.

Over the past two years there have been countless sedations, EKGs, ECGs, chest x-rays, a valvoplasty, and a cardiac catheterization.  There has been good news and bad.

This week we go back to Iowa City Children’s Pediatric Heart Unit.  Tomorrow, Boy-o will be checked, pricked, and prodded.  Thursday, he will undergo another cardiac catheterization.  They will send a wire up a vein, starting in his hip, to explore, measure, and view the chambers and valves of his tiny, delicate heart. He will be alone with them for at least four hours, while my husband, Bon Bon and I wonder the hospital halls, looking for distraction and solace in the blank faces of other terrified parents.  Wondering who’s going to get the bad news today.  We do not speak to these strangers.  There is too much to say, nothing we can say.  “So what’s wrong with your child?” - worst pick-up line ever.

 I love him I love him I love him. I live every day with all this lurking in the back of my mind, and I willfully ignore it, so that I can function.  So that I can breathe.  I save my worry for special occasions.  This is one of those occasions. 

I can’t breathe anymore.