We have a wonderful new boy!  Wayne.  He is now 8 weeks old.  Healthy as can be… but we can’t help but worry.  We seem to “see” cloudy eyes, sensitivity to light, and one eye slightly bigger than the other.  We, finally, took him to see our primary care physician to get a second opinion before freaking out and calling Dr. Greenidge (who has already seen him twice.)  Our primary doctor said it seemed that his eye was… just a bit cloudy looking and that we should see Dr. Greenidge.  That was around 11:00.  We, of course, called Dr. Greenidge and basically told him we would be in asap.  Our appointment was at 1:30pm.   It was the longest 2 1/2 hours I’ve ever lived through.

I can’t explain every emotion that we went through, but I’ll try to tell you.  First, I went completely numb.  It wasn’t the same feeling that I had with Christopher.  With Christopher we didn’t have a clue what was wrong, so we were very scared, upset, and confused.  We were feeling a terrible sense of horror with his eye turning so white and cloudy so fast.  But, we didn’t know what happened, what (if anything) could be done, or time to worry as we were constantly on the move that day.  First, our primary (who at that time had NO clue what it was, what to do, or who to send us to) where we spent about 2 hours before, finally, being sent across the bridge an hour away to a specialist.  Then to the specialist where Christopher was diagnosed.  We at least knew what he had by then.  Then back home to bed (we finally got home about 8 or 9pm that night.)  Then we were both on the internet all night – sleepless and worried – researching the disease, the dr we were referred to (Dr. Greenidge) see the next morning.  Then to Dr. Greenidge where we started a 4 surgery marathon.  The rest, as you know, is history (and you can read about most of it in my earlier blogs.)

With Wayne it was a complete numbness.  I couldn’t help but compartmentalize those horrified feelings.  They were there… clearly… and I could understand the feelings… but I didn’t feel them.  The tears were right there – ready to be spewed out, uncontrollable… if I had allowed it.  The sick, spinning in my stomach was right on the verge… had I simply let it start.  The gagging  that would make me sick was right in my throat… but …  I didn’t let it happen.  It was if I was seeing myself from another part of my brain “experience” all of those things… without actually experiencing them.  And that was almost as bad as being able to feel them.

While the physical symptoms were able to be put in a glass room within me, my thoughts about the implications were not.  First there was the thoughts about the terrible pain we were going have to put my 3rd son through.  The countless trips (one hour each way) to both Dr. Greenidge’s office and All Children’s Hospital.  Having to waking him up at 4 or 5am to be at the hospital for surgery.  Visions of the hours, days, weeks, months, years, and life of torturous pain (from surgery, drops, etc.) he will have to experience.  My wife and I having to hand him over to doctors and nurses to force him to sleep against his will, cut him with a scalpel, poke him with all kinds of instruments.  Then having to comfort him through the hours of crying because his eyes hurt and he has no clue why?  I thought about having to patch him and pray that he didn’t accidentally poke his eys.  Of having to force open those surgery-sore eyes and put drops in his eyes that more than likely sting.  It was really hard imagining the days ahead for him.

Then I had a new worry – not present with Christopher – How would Kevin and Christopher deal with all of this torture?  Christopher already gets VERY agitated and upset if his brother is hurt or crying in any way.  He has even tried to hit me because he didn’t know what to do before because Kevin was crying and I was trying to console Kevin.  He didn’t know if I had caused it or not… but he was upset and really sad that Kevin was crying.  What would they think of Wayne?  of Me and Laura (as we have to make our baby cry by taping shields to his face, peeling off the tape, forcing open the eyes to put drops and gels after surgery, and drops if needed?)  Wow… another side effect to our lives of this horrible disease.

I was also worrying about the effects it was going to have on our life.  Christopher’s diagnosis changed our lives – forever.  In so many ways… good and bad.  What would this one do?  We are still dealing with the valve surgery that had to be done on Christopher recently.  It was very stressful.  He had to wear a shield at nap time and at bed time for over 6 weeks every night!  Drops 4-6 times a day.  Christopher cried almost every day for the first 3 weeks every time I peeled the tape off of his eyes.  And I can’t tell you how many times a day we had to tell him to “Wash your hands” and “Don’t rub your eyes!”  How would we deal with this too.  Laura is one semester away from being done with school (plus a semester where she will intern.)  How would she be able to attend 4 classes and deal with this?  How would I be able to finally get a job after all of my computer retraining classes?  We are on the verge…literally … the cusp of finally repairing out life to where it should be.  How in the world can we deal with this too?

As Laura and I drove to across the bridge (remember it is an hours drive) we didn’t say too much.  Laura tried to talk to me… but I just couldn’t bring myself to speak too much.  She expressed some of the same fears I did… Mostly, we were both in complete shock that we were making this drive… again.  It was, simply the longest drive I’ve ever taken.  Ever.

We arrived at Dr. Greenidge’s office and signed in.  It was packed.  We waited over an hour before being called.  When Dr. Greenidge arrived he took Wayne from us and very sympathetically asked us what happened.  We explained our concerns and that our primary had some of the same concerns and here we are.  He took a long, long look into his eyes.  Wayne started crying and screaming almost immediately and didn’t stop until he was back in his daddy’s arms.  He hasn’t really been held by very many people and he is very attached to both his mom and dad right now.  It was very scary to him to be looking at and to be held by someone who wasn’t us (was he going to have to get used to it like Christopher.  I still remember when Christopher was almost 2… he was very mature and would sit on the gurney… he would cry as he was wheeled to surgery waving to us as he drifted farther and farther away… but he was old enough to know that he had to have the surgeries at that time.  Hell, he had been down that hallway about 30 times at that point.)

Dr. Greenidge held Wayne… looked at us with a solemn face and very patiently said… “His eyes look perfectly clear to me.”  He smiled.  We got home around 5pm and we were just as exhausted as we were after a day or two of no sleep.  Just the memory of and the worry of what “could be” is completely terrifying and exhausting.  However, we slept really good that night and I don’t think I’ve hugged all of my boys as much as I did that night… in my life.

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