Josiah joined our family January 22, 2002.  He weighed 9 lbs. 6 oz. and was absolutely gorgeous.  He was completely perfect as far as I was concerned.

However, the Dr. pointed out a large cataract on Josiah’s left eye; a big white cloud-like formation covering his cornea.  A pediatric ophthalmologist confirmed Josiah needed surgery right away.

Our tiny baby had to be patched until the cataract was removed. The concern was his right eye would work extra hard while the left eye would deteriorate.   Eventually it would just stop working.

Until surgery, Josiah had to wear patches over both eyes at all times. I was crushed.  I wanted desperately to be able to gaze into my newborn son’s eyes as I held him. I wanted his siblings to bond with him.  I wanted Josiah’s eyes to be ‘normal’.  I didn’t mind Down Syndrome.  I did mind the cataract which prevented him from seeing.

That should have been the least of my worries.  Within 2 weeks from birth, Josiah would not wake to nurse.  He slept for unusually long stretches of time.  The typical tricks that rouse a sleeping baby had no effect on him. I would strip him down to his diaper, thump his feet, rub his back and put a cold wash cloth on him.  He barely budged.

It was winter.  Some of us had colds. I feared Josiah was getting sick, though he didn’t have any symptoms. He just slept non-stop. I was concerned he had failure to thrive syndrome.

One morning the urine in Josiah’s diaper had an orange tinge to it.  The pediatrician examined Josiah but seemed unconcerned.  I asked about supplementing with formula because I felt Josiah was not getting enough nourishment.  He advised against it.  When I showed him the orange tinge in Josiah’s diaper he rationalized ‘old urine’ tends to discolor sometimes.  Babies don’t hold their urine, I thought, becoming increasingly alarmed something was wrong with my child. However, he reassured me everything would be fine and sent us home.

The next morning Josiah was still very lethargic.  As Rick was about to leave for work he found me sobbing.  I insisted something be done to help our child.  I knew the way mother’s do, this just wasn’t right. We ended up taking Josiah to the Emergency Room.

The poor little guy was dehydrated. Hooked up to an  I.V. Josiah looked so very helpless.  Against the Dr.’s advice, I began to supplement his feedings with formula.  After 3 days he was released.

Two days later however, we were back.  Josiah’s condition had worsened.  We switched pediatricians immediately.  His new doctor discovered Josiah had RSV. Respiratory Syncytial Virus causes infections of the lungs and respiratory tract.   Most likely he contracted it while hospitalized for dehydration.

Josiah’s cataract surgery had to be postponed.  His opthalmalogist prescribed a small gray fabric mask that covered both of Josiah’s eyes.  He wanted to ensure Josiah’s vision would not deteriorate while waiting for him to recover.  So my precious little guy was completely blinded and vulnerable.  It broke my heart.

The days passed in a blur.  I figured we’d be out in a few days.  That didn’t happen.  Josiah wasn’t improving.  They tried to send us home, prematurely. A few times they insisted our insurance would not cover another day.  They said Josiah was getting better and didn’t need medical attention anymore.

I knew they were wrong.  I became irrate.  I recall telling a Dr. if they tried to make us leave before my son was well they would find me dragging on his heels, kicking and screaming all the way out the door.

It was at that point I went from simply being Josiah’s mom to becoming Josiah’s advocate.  I became powerful because he was powerless.  I became the voice he didn’t have.  I  insisted Josiah get the treatment he deserved,

The next day we were transferred from that small county hospital to a large city hospital many miles away. Josiah’s tiny body was swaddled in a huge blanket, strapped in a much too large gurney and hoisted into an ambulance.  

So much for him not needing medical attention anymore.

He stayed for 3 weeks.