We are one day into our worst nightmare and already it is proving too much for us.  I can never tell all that we deal with but I’ll try to let you in on a few of the problems so far:

I have three children – Christopher (5), Kevin (2), and Wayne (2 1/2 months).  When Christopher went through this it was devastating to us and we just made it through.  This time we can’t just “make it through” because we have two other boys counting on us for their happiness and basic needs.  Today, I needed to watch the boys so my wife can study.  Normally, I take them all outside so the older boys can play.  They’ve been cooped up inside for 3 days now and they need to get outside.  We can’t punish them with our sorrow … it just isn’t fair.  Problem is that Wayne is extremely light sensitive and we’re sure of it now.  I can’t just “take him outside”.  That is a real problem we have to face now.  There isn’t any balance or fairness… one suffers for the others.  Frustrating and sad.

When Christopher’s issued cropped up 5 years ago (almost to the day) we had to spend so much time taking him to the doctor, dealing with the drops, after-care, patching, our emotional turmoil, etc.  Running a real estate business had to be put on hold (read some of my past posts to understand a little better.)  Then the market fell apart and the entire economy sank.  Real estate was a memory.  I learned how to deal blackjack, worked as a waiter at Cheesecake Factory, went to school to take classes so that I could get my teaching certificate, taught 5th grade for a year and a half (then we had to move over an hour away from where I taught so I had to quit… the gas was killing me.)  Now I’m trying to get a job as a Jr. .Net programmer or something in that line of work.  It is a hard industry to break in to.  I’ve gone to school and learned some programming and I even got a job interview… problem is that we just can’t work in a job, Laura’s school, watching the kids (all three), me studying for my certifications… and now an unknown amount of surgeries, post surgery follow ups, drops, after-care, etc… Something will have to give.  I fear it will be my job hunt.  Laura is so close to finishing school that we can’t let that go unfinished.  Wayne has to have the surgeries to try and save his eyesight.  Kids have to be watched.  My certifications and job hunt are a desire… not a need and that will have to be put on hold.  Talk about a bummer.  Hard to swallow… but we just can’t do it.

This time we HAVE to hold back our emotions.  We have two little boys who have to remain happy.  It isn’t fair for our anguish to affect them.  But holding those emotions in is very hard and hurtful.  It makes us angry, on edge, and ill tempered.  Dealing with normal everyday issues is now a real problem.  Already… after only 1 day.

We do have help from time to time… and we appreciate it.  But it is still extremely hard.

One last really big problem I have… And I need feedback because I just don’t have the energy to expend to figure it out on my own…

This site… this blog … was started because of Christopher.  It is called Christopher’s Eyes… Now I have two boys with glaucoma.  Christopher and Wayne.  Do I start a completely different blog for Wayne?  Do I change the name?  It isn’t fair, now, for Wayne to be forever remembered under Christopher’s name… I never dreamed that there would be another son who had this horrible disease… I just don’t even have the energy to figure it out… Help.