The Beginning, The End

When I was pregnant with Michael, I used to joke that any test I took - I failed.  My tests always came back positive and so I got to be very familiar with the my OB and her staff.  In fact, I went into the office every Monday, Wednesday, and Friday at the end of my pregnancy.  The nurses put up a sign in my honor - dedicating the chair to me.  For someone who is not a fan of doctor's offices (me!), I got to be quite comfortable there.  As long as my baby was healthy, I would go as many times as needed.

And then when the ultrasound technician spent an inordinate amount of time looking what looked like a dancing chicken.  When she went to get the specialist, I knew something was up.  I know now that when medical professionals don't look you in the eye, something is wrong.  I understand that - it is hard to give bad news to people.  I get it.  In a way, it gave me a moment to steel myself for whatever was coming my way.

After several more ultrasounds, it was determined that my son had a congenital heart defect.  A defect that ultimately was diagnosed as Hypoplastic Right Heart Syndrome.  Michael would undergo at least 3 open heart surgeries.  

Michael was born at 6:52 pm on July 1.  And was promptly whisked away to stabilize him.  I got to see him for a few moments before he was transported to the Children's Hospital in the CICU unit (the Cardiac Intensive Care Unit).  I got to touch his skin, smooch him and he was on his way.

The next day, I begged to be discharged so that I could be with Michael.  I needed to see him.  To be with him.  And so I was allowed to leave.  And I stayed with Michael in the CICU until I was kicked out by the nurses to go to the sleep room and then I would be right back there the next morning.  I never left.  I rubbed his back.  I sang to him.  I read him books.  And when I first got to hold him - amazing.  My greatest joy.  My sweet son.  He had surgery at the ripe old age of 4 days.  He was discharged 5 days later.  A miracle baby.

It followed the same path with his subsequent surgeries - at 5 1/2 months and just before his 3rd birthday.  I never left his side.  I couldn't be far away from him.  He needed me.  I needed him.  When I couldn't hold him, I would lay my head down just beside his bed.  Me standing up, bent over with my head beside his.  His surgeries and the meds sometimes left him agitated and it seemed to sooth him when I was so close to him.  It wasn't the most comfortable of positions, but I didn't care.   Whatever worked - I would do it.

With every new school year, I found myself repeating Michael's history.  I had my speech memorized.  It was second nature.  I knew Michael's anatomy and history like the back of my hand. 

Michael went to the cardiology office frequently - from every two weeks to every two months.  He graduated to every six months in recent years.  I used to joke that going to the cardiology office was like our Cheers.  Everybody knew our names.  They would set up the Lego Star Wars game for Michael in the waiting room when they saw his name on their roster.  They had watched him grow from a cranky-in-the-office 1 year old to the tough, easy patient 9 year old.  I didn't have to bribe him with a trip to Target after the appointment any longer.  We still went there, of course.  His last appointment was the fastest.  He was doing really well.  His cardiologist was pleased.  We left with an appointment for a Tuesday in June. 

And then that terrible, horrible Thursday, I found myself in somewhat familiar territory.  With medical professionals who couldn't look me in the eye.  With my repeating his history to anyone who would listen. And then, with me half bent, with my head next to his and rubbing his head.  Only this time, there was no need to soothe.  There were only tears.  My tears.  The beginning became the end.