Notes to self.

The one good thing about time is that it changes perspectives.  How long until it gets changed?  A month?  A year?  Five years?  10?

Five years ago, this very night my son William died in the Emergency room (4:19 am).  I don’t get to talk about him much anymore.  Will was with us for 11 months.  But I really only knew him for 13 days. 

Will was born at 38 weeks on October 15, 2002.  He was 6 pounds, 14 ounces and 19.5 inches.  He was beautiful.  And tiny.  His head was so much smaller than anything I could have imagined.  He was born very healthy with Apgars of 9 and 9.  He took to nursing within the first few hours.  The day we were discharged, it snowed.  It snowed the first big, fat, fall snowflakes.  We took him home wrapped in a blue Carter’s duckie sleeper.  He swam it…the sleeves were rolled up.  We took him home to our third floor walk-up apartment and began our life as a family.

He nursed great.  He was a good sleeper.  Stephen was a wonderful dad even when the crazy, new mama hormones kicked in. 

In the early hours of his 13th day of life, I woke to find that he had not nursed.  I was engorged.  I picked him up from the bassinette.  He was awake but his color was off.  He didn’t want to nurse.  He sounded like he had a cold…a chest cold.  I learned the term later: mottled.  He was fighting to breathe.  We didn’t know what it was.  But he was scheduled for his 2 week well child check at 10am.  This was 6 am.  I got spooked.  Instead of the ER, we took him to Urgent Care as soon as they opened.  The urgent care doc (and don’t get me started on urgent care doctors…) said that his color was off but that he was most certainly jaundiced (he wasn’t) and did I have a bottle of “feed” because he looked hungry.  She wanted him transported to the hospital to start treatment for jaundice.  An ambulance came…in their own sweet time…to take him to be admitted.

I’ll be right back…the rest of this is going to require a xanax if I want to finish.

So the paramedics came and looked him over.  They determined that he wasn’t jaundiced (duh) but that he couldn’t breathe.  They told me to lay him on the table so they could get a pulse/ox on him.  Check his oxygen saturation.  When I laid him on the table, he coded.

Code blue.  Watched my baby turn blue laying on the table.  Watched them start CPR and intubate him on the spot.  Still in full post partum crazy hormones and engorged because he hadn’t nursed in 10 hours….code blue.  I lost it.  I fucking went nuts.  Stephen had to talk me down enough to follow the ambulance to the hospital.  When we got there, we stood outside the trauma room and watched them work.  They had probably 15 people in there.  They had already drawn blood and started a battery of tests.  Not pneumonia, not RSV, not breathing on his own…big trouble.  Within 4 hours they figured out that he had Late Onset Group B Strep (GBS).  Which is bad news, very bad.  Then the seizures started, and then the fever.  And then they flew him to University hospital 2 hours away.

We were there for 7 weeks, 2 surgeries, 1 room at the Ronald McDonald House (they will always be close to my heart) and a shitty prognosis.  In his life he (and we) were dealt: seizure disorder, diabetes insipidous (couldn’t regulate blood sodiums), underactive thyroid, cortical blindness (nothing wrong with the eye but something wrong between the optic nerve and the brain), hydrocephalus (surgical shunt put in), moderate hearing loss (eventual hearing aids) and moderate gross motor delays.

11 months.  11 months of surgeries, physical therapy, meds, intervention after intervention.  The worry and the tears.  The wondering how I would ever be able to be a proper mom to a special needs kid.  Wondering if I had gotten too cocky with God and too happy with my perfect marriage, flawless pregnancy and beautiful son.  Mourning the child that I had for too long and mourning never really knowing the baby in my arms who would probably always be very baby-like despite his age and size.

And then there were the recurrent ear infections, the upper respiratory crap, the med tweaks.  The pumping and bottle feeding because he was to mentally compromised to nurse. 

There was one last thing.  The ear infection that wouldn’t go away.  The second round of antibiotics just begun.  The fever that was so high for so many days.

William died…my Will…died on September 16, 2003 at 11 months and 1 day old.  The death certificate (delivered 3 days before Christmas) listed as cause of death: sepsis due to otitis media (primary) and dehydration (secondary). 

The last night, there in the Emergency room when the doctor said “we’re working hard but we’re losing him…how much more do you want to do?” I had my last conversation with God for quite a while.

If you were going to take him, I asked, why didn’t you take him the first time we were here?  Why put us, and him, through all this?  (The answer came, as it often does, in hindsight.  Many years later.)

We buried Will in a little white box.  We sang “Jesus Loves Me” at his funeral but the words were all wrong.  The words were printed and handed out from some random hymnal somewhere.  They weren’t the words we sang to him…they weren’t words that I knew.  And it broke my heart all over again.  He was buried in OshKosh overalls…we had just bought them at Penneys the weekend before for his birthday party which was going to be a John Deere Tractor theme.

When we picked out his headstone, all the baby ones had lambs and crosses on them.  I?  Was still angry with God and felt that my son deserved something different since I felt that he (and we) had been betrayed.  Will’s marker has a toy soldier on it and a bear with a bow.  He was of gentle spirit but battled his whole life. 

So that’s it. 

That’s what happened.  Five years ago tonight.

And I thought it would be the worst thing to ever happen to me. 

And it should have been.

Right?

William H. K. II

October 15, 2002 – September 16, 2003