“The weight of the world…”  What exactly does it mean?  Let me share my thoughts…

A child, vibrant in every way…

soaking life up every second of the day…

Looks to his father to protect him.

Why so many surgeries?

His father cries “Why can’t it be me?”

As he hangs his head and weeps.

My son has congenital glaucoma.  This is a very rare disease and not many people have ever even heard about it.  Here is my story:

My wife and I came home from work for lunch one hot summer day.  We are both Realtors.  It was July 27, 2006.  It just happened to by my wife, My son’s mother’s birthday.  Christopher’s grandmother, my wife’s mother, quit her job to watch Christopher for us so my wife could come back to work… had just laid Christopher down for his daily nap.  We ate some lunch and about the time we were ready to leave… Christopher started crying… He was getting up!  We were happy that we’d get to hold him, kiss him, and love on him before we went back to work that day.  The next sound I heard, and I’ll never forget it, was my wife screaming…

My son’s eye’s had turned completely white.  No color.  At all.  Just a milky white color…Fear overcame all 3 of us that day as we ran around the house yelling and screaming for about 2 minutes.  It was surreal and it felt like we were in a nightmare.  Finally, as we came back to the real world… we understood that we needed to see Christopher’s doctor right away.  We packed up the car and drove straight there, calling on the way.  When we arrived… every one of the nurses and doctors were waiting with a scary, solemn anticipation.  The waiting room was cleared (extremely unusual… in fact, the only time I’ve ever seen our Doctor’s office this way) and we were ushered to a room.  The Doctor was there within seconds and she was extremely confused.  She mumbled a few things, shook her head, and left in a hurry.  The nurse came in and said that the Doctor was making a few calls and would be back in a moment.  30 minutes went by.  I felt something was terribly wrong… Surely, the Doctor knew what was going on… Right?   Wrong.

Finally, I left the waiting room… not a soul in sight in the hallway… no doctors, no nurses, no patients (I’m telling you I thought I was in the twilight zone at this point – I actually tried to wake up from this nightmare at this moment)… I saw a nurse dart out of the “No Admittance” area … so I asked her what was going on?  She pulled me by my arm into the Doctor/Nurses only area, sat me down at a computer and asked me to google “pediatric opthalmologists”!  What?  Are you kidding me?  There were 9 nurses and doctors on various phones and computers calling out names of people who may be able to understand what was wrong with Christopher’s eyes!  As I called out different Doctors and Groups of doctors – We’ve called this one already, That one works with so and so, Who is next… Give me that number! – I realized several things at once: 1) We had a major problem. 2) We had excellent Doctors (Even though they didn’t know what was wrong , they were willing to admit it… instead of trying to hide it.) – They were searching immediately for someone to help.  3)Life as I knew it was about to change – forever.

On the way to All Children’s Doctors Group in St Petersburg, FL… my wife, mother-in-law, and I were still very frantic.  We still had no clue.  There were 100 questions going through our minds… But mostly we just asked WHY?  That is a word I have grown to hate.  That word eats at me from the inside out – every day of my life and it competes with my every thought.  WHY. WHY! WHY? Doesn’t even matter how you write it… It is the same.

We left the Opthalmologist office around 7pm at night.  We knew what was wrong.  We just had no clue what to expect.  This doctor was 100% sure it was Congenital Glaucoma, he just didn’t treat it.  Once again, (a small light in this dark story) we were lucky – He called around for us and found us a Doctor that just happened to have moved here very recently who specialized in cases like Christopher’s.  Dr Greenidge.  There is a name that brings tears of hope and makes my heart beat just a bit faster when I say it.  (My son, only 23 months old now, even says it.)  We couldn’t see him until the next day… Friday.

The ride home was dead silent.  All 3 of us hung our heads … almost in shame.  It was one of the longest drives I’ve ever taken… I don’t remember seeing a thing.  I just remember that damn word… WHY

The internet is an amazing thing.  It is a GREAT thing… and a HORRIBLE thing… And everything in between!  And we got all of that as we searched for everything we could find on his condition.  We didn’t sleep a wink that night as we both – silently – searched, and searched, and searched.  There isn’t much to know about it.  It’s pretty simple really.  The “drainage” system in the eyes – just didn’t form properly for Christopher.  He has Glaucoma.  It can’t be fixed as easily as someone who develops glaucoma later in life.  It can only be fixed with surgery… invasive surgery… painful… esploratory… sensitive… surgery… after surgery… after surgery… after surgery… after surgery… after surgery… after surgery…(19 trips to the hospital so far… about 100 visits to the specialist – doctor visits.)

So… That is how it began.  You would think that it gets easier… it doesn’t.  In fact, it seems to be getting worse and worse.  I’ll continue my story next time… I’ve got a lot to share… I don’t even care if anyone reads it.  It just feels good to get it out.  After 19 months of having it pent up inside… it is getting to us.

The weight of the world is:

Having a beautiful son… who has an energy that is unmatched… who doesn’t stop for anything… keeps going… soaking life up… learning… loving… smiling… laughing… growing… UNTIL… you put him in a car seat… and he smiles at you for a solid hour as you drive him to the place that is going to stick him with needles… put him under anesthesia…  weigh him… prod him, look at him, take him away from you… take his life away from your hands… drill holes in his eyes… cut his eyes… take measurements… then give him back to you screaming as he comes out of the surgery… crying as he looks for comfort… confused … just this morning… he was happy as could be… and now… all this pain… I can see it in his eyes… “Why Daddy? Why?  What did I do?  Why don’t you stop? Why do we keep coming back here? Why can’t the doctors just fix it?”

I feel like I’m weak… there are countless people who are a lot worse off than Christopher.  His biggest threat to his life is the anesthesia that he has to get every time he goes under… I understand that.  What is so hard to understand… is how much work it is to deal with this every day.  It just never ends…

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