I know a lot of you have been wondering what is going on with my blog “Christopher’s Eyes”. I have thought a lot about it lately and have decided to retire it. Before you get all up in arms about it… I’m retiring it because I need to update some things surrounding the blog.

I need a new name since it isn’t just Christopher that has the disease now. It isn’t just about his eyes anymore either… it is about the constant battle we face each and every day with 2 of our boys and the disease. And it isn’t about MY feeling anymore. It is about all of our feelings – Me, Laura, Christopher, Kevin, and Wayne’s.

I have a new blog that I just started working on. It is by no means laid out the way I’d like it, but I wanted to get it started so that those of you who want to can start enjoying it again if you wish.

Feel free to check out the first post of my new blog:

http:\\theEyeWars.Wordpress.com

(I have bought the domain too… I will get it up and running very soon… until then… feel free to click the link below to start reading. And I promise… I’ll update very frequently. And don’t fret… I’ll get the layout set up soon so that it is much more appealing!) Let me know what you think!

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I promised a catch up blog…

Christopher’s pressures have been pretty stable.  However, his sight has worsened … just slightly.  We are obviously always cognizant of how is is actually seeing things but sometimes it just creeps up on you and surprises you.

During conversations with him about 3 weeks before school let out we realized that he can’t see the “word wall” in his class!  Once again… he is just too smart for his own good and hasn’t needed to reference it but it makes us wonder what else he compensates for with is intelligence that could be made more readily available to him if we knew about it.  He is just on the cusp of not needing “services” so it is really hard to gauge at this point.  We will definitely be focusing on this more as time goes by (what he can and can not see in the classroom and out.)

Wayne is still in that state of uncertainty.  The last time he went for an EUA his pressures had started to elevate again… but not enough for any surgery.  We changed the drop regime and he goes back June 29th.  We (Laura and I) think that his eyes are starting to look cloudy… but then we don’t … then we do.. then we don’t.  It is this uncertainty that has always plagued us and almost drove us mad!

We always feel that we are second guessing the doctor or undermining him… when we think we see something he doesn’t… but we have been correct some of the time.  We think we’re worrying too much or over analyzing… but in the end… we DO see things and changes – especially since we are always looking for them – quickly now.  And sometimes the doctor has no baseline to go by.

Either way… we now wait until the 29th… and hope that we are wrong and that his pressures are, in fact, not rising and that his corneas aren’t any more cloudy than they were last time.  Waiting and hoping… that is all we really can do now.

Kevin – well he is just fine.  🙂

All three are starting to fit the mold of typical “brothers”.  And it is great to watch.  On one hand they fight (and we are especially sensitive to this since a blow to Christopher’s right eye could be devastating since he’s had a trab, a valve, and countless other minor operations to it.  It just isn’t that “strong” from a physiological standpoint) just like brothers.  And we mediate and break it up.  On the other hand if I get onto Kevin for something he has done and scold him… Christopher immediately wants to protect his brother and/or stand up for him.  He has actually gone to his room because Kevin was put there (to cool down or to finish his screaming when he is having a fit… not really as punishment) to show support for him.  He actually gets upset with us and defends Kevin even if he has been the object of Kevin’s outburst (i.e. Kevin yelled at Christopher or hit him or took something from him, etc.)  Kevin does the same thing… he gets sad and starts to cry if Christopher gets in trouble.  That is such a wonderful thing to see… boys sticking up for their family.  Both boys, of course, stick up for Mom too!  I have to be really careful what I say to her in front of them from now on for sure!

I have a new job here in Tampa which I love!  The boys have all settled down and most behavior problems have instantly disappeared once I was back for good… They had a little bit of a hard time and acted out quite a bit when I was in Jacksonville… but they are fine now.  I’m really glad for that and very glad to be home.

Laura had graduated from FSU with a Bachelor’s degree in Visual Disabilities!  We are all so proud of her! She will most likely be working in August for Hillsborough County School District (that is the plan anyway) and she is most anxious to get started!  She is very good at what she will be doing and most people in her field already know that!  She is even a contributing writer/consultant for a newer glaucoma site!  (Web link will follow as I don’t know it by heart and she isn’t here at this moment!)  Way to go honey!  

Ok… that about does it.  Until next time… take care!

It’s been a while since I last posted an update… we have been b-u-s-y! I don’t have time to catch up everything in this post (but I will try to later), but I did want to let you know about a few things…
Our oldest son Christopher is a really bright child. I’m not saying that just because he is my son; and I’m not just being a “proud father” either. He is really a smart kid. For instance, he ponders about what happens when you die, where babies come from, can do multiplication (he is a kindergartener remember), and loves to sit for hours and either read or listen to me read (we just finished the first book in the Chronicles of Narnia… he hung on the edge of his seat every moment we were reading the book!) So, he is smart… too smart…

We have had company for the last week and it has been very hectic around our house. Laura’s sister and her 4 kids have been visiting and the youngest 2 are best friends (cousins actually) with Christopher. They stay up late, eat together, play together, and, yes, fight constantly. Needless to say keeping them busy and still taking care of the daily chores of life has been a challenge. Well, a few days ago we woke up and after about an hour or so Laura asked Christopher if she had given him his eye drop. He said “Yes, mom… of course you did.” Laura really didn’t remember because we get so very busy. I mean at the time my middle son couldn’t talk because he had bit his tongue so hard he needed Tylenol constantly, my youngest had an earache so we were giving him pain medicine on top of the eye drops he gets in the morning, changing diapers, getting breakfast ready, making coffee, etc, etc… So, she really didn’t remember. No problem… she had given it to him and it is so routine now that we do it without even thinking for Christopher. Drops in the day and drops at night… got it!

Fast forward to two nights ago. Our night-time routine is just as busy. Dinner, show, snack, drink, relax, book, brush teeth, eye drops, sip of water, potty, kisses, hugs, tucking in the bed, (all times 3 with variations for each!) Busy… I’m in the bathroom brushing Kevin’s teeth (as he is screaming and crying because his tongue is really hurting when I do it) and in walks Laura. She asks “Did you already give Christopher his eye drops?” Oops… I didn’t remember… hmmmm. After talking with Christopher… we decided that I did.

Yesterday morning. I’m at work. I get a call from Laura… “Did you give Christopher his eye drops this morning?” No… definitely no… no doubt about it… I didn’t “forget if I did…. I knew that I had not … positively. “No” I answered. “He said you did … just like he has been saying… very convincingly” she tells me. Uh oh…

It seems he has realized that he can play on our business and our splitting of duties to get out of them. We have taken it for granted that he understands how important it really is… and we do ingrain that into him each and every day… but he still doesn’t want to take them (who would?…) Of course, we have had more conversations with him and we explain how dreadfully important they are for him… but, still, I worry… what about when he is a little older and he is doing them himself? We will be watching him do it for a long time, I’m sure. But at some point we’ll be relinquishing those duties to him entirely. Will he understand and commit to making sure they are put in everyday… day and night… without fail? I wonder…

I guess it is true that you can be too smart for your own good. I just hope Christopher isn’t… in this case.

Today, our youngest son, Wayne, went to the hospital to undergo an EUA.  We have been pretty concerned about this and the outcome of it since he has a really bad light sensitivity issue.  Anytime he is in the sunlight… his left eye tears really bad.  He is, obviously, uncomfortable too since he hides his head and closes his eyes.  His pressures aren’t too bad though:  21 in the left eye (the eye we’re concerned with) and 14 in the right.  Dr. Greenidge says that we’re going to try a drop to keep his pupil from opening too much.  Hmmm… weird.  I’ve never looked into that and I wonder if that will affect his vision… We’ll see.  It would be nice to be able to take him outside without having to put a blanket over his head for a change!

But I don’t want to overlook the most important part of today – no surgery… pressures are fine!  Yah!  Thank goodness for simple procedures today.  Wayne… you didn’t have to have surgery today… and we are all THANKFUL!

Whew!  What a rough couple of weeks!  We have been through some very tough challenges recently.  Here is a quick rundown:

I, reluctantly, applied for and accepted a job with the local school board (Hillsborough County.)  I was set to be a teacher again, albeit, a high school ESE teacher.  However, the pay wasn’t the best and it took over 3 weeks to get my processing together.  It wasn’t me… it was the county.  I jumped through hoops, stopped what I was doing and took care of anything they needed… yet still there was always something else they needed.  Just when I thought they were done… I was asked to interview for another job doing what I’ve pursued for the past year – Web Development.  I applied, had several interviews, and was – HIRED!  Yah!  But the downer is that the job is in Jacksonville and requires a relocation for my family.  They can’t move until June so my wife and boys are still in Plant City until the school year ends.  My wife is in the middle of completing her final internship and will, officially, be a teacher and a graduate of FSU’s program to teach the visually impaired!  Yah!

You would think that all of this is GREAT… and it is.  But with these changes come some tough situations:  We are apart.  My wife is raising my boys AND going to school full time until they move up.  This is EXTREMELY tough for her.  It is stressing us out like you wouldn’t believe.  I am up here alone… isolated from my family (except on weekends – which I eagerly look forward to and relish.)  And the added expense of running two sets of household bills is challenging to say the least.

Yes it is tough.  At least I thought it was until we had to deal with a completely new “challenge” today regarding Christopher’s Eyes.  Yes… just when we try to feel like we’re capable of dealing with “normal” issues of life again… Mr. Congenital Glaucoma steps from out of the shadows again to slap us in the face and remind us that he is still here.  Emotionally, it is one of the hardest things I have had to do so far and I couldn’t even do it in person.  Here is what happened:

An email was sent home by Christopher’s teacher today that explained that there would be a school-wide kickball tournament on Friday, tomorrow.  Yeah… we had exactly 3 hours notice and literally no time to think/discuss it before dealing with Christopher on this.  So, I get a call from Laura and she says that Christopher is wanting to play in this BIG game tomorrow.  We quickly talk and decide that he just can’t.  I ask her to put him on the phone.  He is such a mature little 5 year old that he listens as I explain the reasons that this is dangerous… you know getting hit in the head with the ball after someone throws it or kicks him or if he fell to the ground due to tripping – could really cause problems with his eyes… especially his right eye which has a hole in it AND a valve.  He could quite literally go blind in the worst of scenarios.

He listened so patiently and politely.  BUT …(I need a second here to wipe my eyes because they are filled with tears, they burn, and I can’t see out of them… hold on…)

I could hear and feel the horrible disappointment in his voice as he said “awwww… ok.”  He gave the phone back to mom … and I wanted nothing more than to be broke, without a job, and at home to be able to hold him.  To comfort him.  To play with him as rough as I could (I can play with him rough and be safe about it…) right then.  I want to be able to go to the game and run around with him to show him how he can appreciate sports – from the sidelines.  And that it is ok.  That he can be a part of them… without putting himself in danger… but instead…

I’m up here … in Jacksonville… working… trying to get back to “normal”,,, yeah… what a dream.

Thanks for reminding us you are still here… Mr. CG… thanks.

I am sitting here today pondering the absolutely crazy trek we’ve been through in our lives since Christopher was first diagnosed with congenital glaucoma over 5 years ago.  It has been a wild ride of ups and downs and I am in no way fooled into thinking it will ever end.  But what has ended is this:

This disease and all that comes with it… does not control us or who we are anymore.  We are in control.

Laura, my wife, and I have both committed to moving on with life and becoming happy, content, and successful – once again.  We have both been working toward this for several years… but I am starting to feel the change, for the better, in the air now.  Laura is starting her teaching internship in January.  I am so excited for her!  She will be working in an exceptional situation in her field and will have an opportunity to learn things many will never even know is there to learn.  Even within her own field she has an opportunity to work with some really unique cases!  She is truly in the “refining” stages of becoming a fantastic teacher for the visually impaired!

At the same time I am moving into a new profession, one that I have worked hard at breaking into over the last year.  I have taken a position with a company in Jacksonville as a Web Developer.  I am eager to learn, excited that I have the opportunity, and hopeful that this will be the profession that I will be able to stay in and provide for my family with – for the rest of my working career.  We are currently planning on moving to that area in the summer – permanently – as long as everything is “right.”

Both of our boys who are in the “army” – for the fight against losing their sight – are doing very well as of today.  Christopher is stable.  Wayne is stable.  They are happy, healthy, energetic and bright.  My middle son, Kevin (oft not mentioned here because he has no problems with his eyes) is doing extremely well too.  I know that their sight issues will never go away… but I’m hopeful we can get back into somewhat of a normal life in the near future.

As the new year quickly approaches – I am full of hope that it will be a fantastic year!  A new beginning.  Not only for us… but for all who we know!

I know… it’s an oxymoron.  But that is the best way to describe our feelings of late with respect to the “Eye Wars” that both of our boys are battling.  Christopher is doing well.  He doesn’t see the doctor again for a while.  His pressures were comfortable the last time we saw Dr. Greenidge and we are hoping that stays that way for a very long time.  We were very worried about Wayne over the past few weeks.  So worried, in fact, that we took him to see our surgeon just a few weeks ago because he was tearing a lot and his eyes were having a hard time opening… especially, the last eye to have surgery… the left one.

The doctor really trusts our judgement, now, and decided to move up the EUA to Yesterday, Friday.  He said there is a lot more redness than he would like to see and but the pressures were great.  He advised us to put him back on Tobradex four times a day for 2 weeks to help the eye heal a little more quickly.  We will still be doing another EUA in a couple of weeks to see how that is working.  For now though… we are happy.  (Notice I put a period instead of an exclamation… “cautiously enthusiastic” if you know what i mean.)

On a completely unrelated note:  Yesterday we all went to the county fair and had a blast.  My entire family threw a bunch of ping pong balls at a bunch of fish bowls and (lucky us) won 3 fish.  We currently have a fish tank because we won a goldfish at the last Strawberry Festival earlier this year (once again… lucky us.)  We elected to take 2 fish and a rubber duckie.  Christopher named his fish “white face” (can you guess why? lol) and Kevin, who is our oft not mentioned middle son with no glaucoma issues, named his fish “water” because Kevin said he “likes water.”  On the way home from the fair the bag Christopher was holding that contained his fish sprung a leak.  He noticed and, being the very sensitive child he is, screamed in a terrified yell that his bag was leaking and that his fish would die if we couldn’t do something about it.  We saved the fish, thankfully and placed both fish in our tank when we got home.  Yah.

Then tonight when we got home from our errands… Christopher’s fish was dead.  I had to break the news to him.  I braced myself because I know what a sensitive child he really is.  He truly cares about things and is truly affected by things that other kids could care less about.  I was able to talk to him in a very quiet, calm area and as I started to explain it to him… he said “Stop, don’t tell me… I know!” and he realized that his fish had died.  He cried for over an hour and I had to actually lay down with him and hold him until he fell asleep.  He and I did bury the fish and he was very strong as he pushed in the first few handfuls of dirt over the fish in the hole.  His tears, appropriately, poured off of his cheeks and into the hole as he sat on his knees and pushed the dirt in.

Later as he tried to calm himself down, and couldn’t, he cried out that “All of his family is dying…” and when questioned about what he meant he recalled that his great grandmother “MeMa” died (2 years ago on July 4th) when he was 3 years old, and that his “PaPa” (my father who I still miss dearly every single day) died (last year in April.)  I mention all of this only to say that I am proud that we have raised such caring, passionate, loving children and that he has the capacity for love, sorrow, anger, happiness, understanding, and compassion.  I love all of this… but I hate seeing him in such emotional pain at only 5 years old.  Children, all of the, are amazing people with extraordinary insight into life.  As adults we seem to make things so much more than they are OR so much LESS than they should be.  Shouldn’t we have compassion for the fish that we’ve had only one night and feel that we’ve lost something when it dies?

I can’t say that I would have cared at all… until Christopher showed me the true meaning of love and compassion tonight.  Once again… HE is teaching ME.  He is my hero.  Love you bud…