Wayne had his 4th surgery which was his 5th trip to the hospital.  From here on out… I will simply call them all “surgeries” since he has to do the entire process… check in, physical, drops, pokes/prods, take him from us, anesthesia, IV, breathing tube, clip his eyes open, check pressures, etc.  He won’t actually have surgery on his eye(s) each time… but for us and him… it is surgery.  So, like I said, Wayne had surgery for the 5th time Monday, at All Children’s.  The doctor said the pressures were 14 in his right eye (after surgery the week before with no drops) and that is just fantastic!  I won’t get my hopes up… but for TODAY that is great.  My wife is letting herself feel a little excited (as is the doctor… we can tell) and that’s great for her… but I’ll stay a little pessimistic about it all – if you don’t mind.  He doesn’t go back for 3 weeks and we are hoping that his pressures will be low in both eyes so we can avoid any cutting on his eye.  That’s always what we are hoping for… low pressures.

We have officially begun a new chapter in our lives… Christopher has begun Kindergarten!  Yah!  It is a bittersweet feeling – we hate having him with someone else all the time… not knowing what he is doing every second of the day, but we LOVE that he is able to be around others in an environment where he will thrive.  He is already impressing everyone he meets too!  We are not even through a whole week yet and he has already settled in to the routine.  We’ve almost got a set routine in the morning.  It’s really weird how much your life changes in only a week!  Before this week… we all woke up around 7:30-8am.  Ate breakfast.  Cleaned up the house and ourselves.  Finally, decided we needed to get out and do something around 11:00am, but most times it was too darn hot!  Nap time.  Rack our brains to figure out what to do in the afternoon.  Boredom.  Not now!  Up at 5:50am… show… get dressed… light snack… out the door.  I actually get to get some work done… and I get to start it at 8:00am instead of at 10 or 11am!  Wow!  lol

Kevin has started school too.  We had to get him enrolled in pre-school because Laura is taking a full load this semester and I am trying to get a full-time job.  And in January, Laura will be interning full-time.  She is almost done with the first step of living her passion… being a teacher for the visually impaired.  Just this month she took her “Professional Educator’s Test” with the state of Florida and passed!  First time… Yah for her!  So, Kevin started school this week too.  Monday he cried the entire morning… didn’t eat… was really fussy and seemed miserable.  Tuesday, a little less crying… still pretty fussy… and not happy.  Yesterday, he wasn’t fussy at all… but didn’t want to “go to school” either and let us know it.  Today, he was happy all morning.  No crying.  No fussiness.  Happy.  And he knew he was going to school.  Amazing how quickly kids adapt.  Scary too.  And … sad.

A new chapter has officially begun.  So much has changed.  Even “the eye wars” have shifted focus a little.  Since Christopher’s pressures were fine last visit a week ago and he doesn’t have to come back for 3 months… we have begun to ready ourselves for other sinister attacks on his vision… mainly… PINK EYE!  😦  It is so prevalent in school and it is truly a scary thing for him.  But we’ve prepared.  We are vigilant about checking his eyes.  We have taught him to wash his hands all the time for cleanliness.  We’ve wrote it on every form the school has that we need to know if anyone in his class has pink eye… right away.  We’ve made best friends with everyone that works at his school that we possible can at this point.  We just want to make sure his eyes are a priority in his life.  It is a lot of work… But, I’d MUCH rather be worrying about potential problems than high pressures and surgeries right now!

Even though it is a new chapter… we are, of course, still in the same book.  Same overall theme.  Same tone.  Same characters.  But I will happily take the new chapter.  In fact, I will still take it one page at a time…

Advertisements

So, after 5 years, it still hurts.  And hurts.  And hurts.  Congenital Glaucoma is definitely the gift that keeps on giving…  With two boys out of three having it, it is as much a part of our lives as peanut butter and jelly.

I had a conversation today with someone close to me.  They said that they were “very optimistic” about Wayne’s prognosis and future.  Both surgeries have gone “great” and that being optimistic was better than being pessimistic.  I had to make a stand… for my sanity… for my future…and for my family.  I had to disagree.  Here’s why…

First, I am very happy that the surgeries “went well.”  That simply means the doctor did everything he was supposed to … very well.  Wayne made it safely through it.  The eye reacted physiologically the way it was supposed to… everything – the mechanics – of the surgery went well.  That doesn’t mean we should throw our emotional armor into the lake… never to be worn again… and assume that since the surgeries “went well” … his disease will be halted, slowed down, or cured.  Experience has shown us time and again for the last five years that it has no correlation to the progress of the disease.  Mainly, because you can’t just cure it… you can’t just “know” what the next step to do to treat the disease is… you can’t just “stop the pressure”… it is a guessing game.  The doctor makes guesses and assumptions and does his best based on 30 years of experience… but in the end… the eye pressure always goes back up.  At least for us.

We lived our life being “optimistic” for the last five years.  Every single surgery, EUA, and office visit we “expected” to hear good news.  Almost always… it wasn’t.  We have been on an emotional roller coaster for 5 years now because of optimism.  It has drained us financially, emotionally, spiritually, and in every way imaginable.  I, for one, am done with it.

My new “leaf” is pessimism…or at least it will be “realism”.  I say that if I expect that something will be wrong with his pressures… and that they will keep getting worse… and the we will have to go to more and more surgeries … Then, when it does happen… I won’t be let down.  It will be the norm.  If it turns out I’m wrong and things get better… then whoo hoo… I am happier than I expected… But what I’m done with is the false belief that this disease can be controlled or fixed in any way.

That being said… I’m done with my depression… my sadness… It is time that I get “realistic” about living life and showing all of my sons that we can take this disease… and win.  It is time to lead my family back into the game of life with a winning attitude and show them how to fight for what you want.  And what we all want is a a break from the sadness… from the heartache… from the letdown… from the exhaustion… from the fear… from the hurt and pain.  We want a little happiness for a change.  That’s what were going to get.  It is a fight… a war…

We will win it…

Coming soon… a new name… a new site… a new attitude… Stay tuned!

“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…