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.

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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…

Our daily life with, now, 2 boys struggling with congenital glaucoma can be, at times, hectic and confusing.  We are managing it… but we are realizing, very quickly, that we must come up with a system.  Just a couple of days ago Laura confessed to me that she accidentally gave Christopher an eye drop in the morning, that he takes at night, and didn’t give him his morning drop.  What should we have done?  We figured it out, of course, and it wasn’t a debilitating mistake… but we have the task now of getting much more organized so that we won’t let these sort of things happen.

Wayne takes a drop of Xylatan in each eye, nightly.  He gets a drop of Tobradex in his left eye 4 times a day… until Saturday.  But, we go back for surgery in 2 weeks and he will have to start taking it again in whatever eye(s) are operated on that day.  He may stop taking drops in one or both eyes that day too, or he may be given more drops, or different drops!

Christopher takes a drop of Timolol in each eye, every morning.  He gets a drop of Xylatan in one eye, nightly.  No Tobradex (which is a powerful recovery drug for use after surgery, mostly) since he hasn’t had surgery in a few months.

Now, add in to the mix that Christopher sees Dr. Greenidge about once a month (sometimes twice, sometimes every 2 months… just depends on how his eyes are doing.)  He sees Dr. Mendelblatt about once every other month.  Wayne sees Dr. Greenidge, presently, in the office, about 2-4 times per month, and goes to All Children’s for surgery, so far, about every week to 2 weeks.  This will go on until we get the pressures somewhat stabilized.

One last factor:  We have a middle child, Kevin, who doesn’t have glaucoma.  He is growing up thinking that going to the eye doctor 5 or 6 times a month is normal, surgery at the hospital is a part of life, living in the dark with blacked out windows is normal, eye drops are normal – except for him… does he think he is the one who isn’t normal?  lol.  He also has to be taken care of and given attention.  This is quite the task as we don’t want to treat him much “differently” while at the same time… he must be treated a little differently.  He should be allowed to participate in sports, swimming, etc…. shouldn’t he?  These are tough questions that we are trying to work out.  We will eventually.

Add to that our crazy schedules:  Laura is a full-time student.  Summer just finished and in the fall she will be taking 3 classes at night, studying daily, and interning weekly.  I am a full-time Graduate student, I’m also studying for some Microsoft certifications (Web Developer/SQL), and, hopefully, will be working full-time soon.  Laura’s mother, my mother, and my sister’s often help us out by babysitting.  Christopher will be starting Kindergarten this fall.  With all of the “caretakers” in our son’s lives now, combined with the movement from one to another, daily, in what is a dynamically changing set of schedules… missing drops, coordinating drops, giving drops, scheduling Dr. visits for each so that we don’t make too many trips, etc… can be a huge challenge!

However, we are settling in… It is OUR life.  We are starting to embrace it.  We will manage it… just fine.  🙂

PS… Wayne is doing pretty well after his first 2 surgeries.  He seems to be much happier (and less fussy), even though his eyes are, I’m sure, sore.  His pressures must be a good bit lower and he must feel much better due to that.  His right eye went from 45 to 28 after the first surgery.  We don’t know what the left eye has gone to after surgery yet as a pressure check won’t be done until his next surgery, a week from Monday.  We are, of course, hoping for a great reduction, but we expect a little.  (His left eye pressure was around 42, I think.)

Thanks for all of your well wishes, offers for help, and interest in our boys and our family!  We can’t express how much it helps us through it.

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!

Christopher’s pressures were 28 Right and 18 Left – yesterday at the surgeon’s office.  That is NOT good news.  We are heading to the hospital on May 2 to put a valve in his right eye.  Sucks.  Really sucks.

I wrote something else here… but I was informed by my wife that I can’t post it, since too many people actually look at my blog.  Ok… that’s all I have then about this.

Chris

That is a tough question. I was speaking to someone really close to me recently. They caught me at a bad moment and asked me “How was I handling things?” Specifically, Christopher’s glaucoma issues. That turned into a very heartfelt, emotional “spilling of the beans”, if you will, of how crappy… emotionally… my wife and I are right now. My very close – person – asked me early on, “Why (there is that nightmare of a word I abhor) did I think I was at the point in my life?” She was referring to a Higher Power… She wanted me to answer something along the lines of “Because I’m not going to church”… or ” I’m not following God’s will” right now… or something to that affect. This person, you see, believes that everything in life is fixed by God… or is lost as a result of not “following” or “believing in” or “not being true to” God. And that is great. For that person. They can believe that all they want.

I ignored the first allusion to God… and, hoping that person would offer some sort of encouragement – that came from their heart and didn’t include a reference to God – of their own… kept spilling my heart. They kept asking me questions of concern (and let me tell you up front… they truly are a concerned person. They love me and my wife … and, of course, Christopher… and want the best for us.) and prompting me to “share” my turmoils with them… so I kept on letting them know how low I have been recently (just read the posts… and you’ll know!)

Then, that person pushed me across the line and I said something that I wish I hadn’t to them. Mainly, out of respect for their beliefs. I was explaining what we go through every day… the constant battle with patching, eye drops that make my son’s eyes sting for 5 minutes after each one… twice a day… the constant trips to the Surgeon’s office and the hospital. The worry – constantly – over things that can increase the pressure in the eyes… Basically, the torture that we HAVE to put our son through – all day – every day… with no sense of “closure” or even a sense of security that it will all be ok in the end… and I told them that I – myself – am tortured, mentally, with the question of “Why?” every day… that I ask it all day… every day… all night… dream about it… wake up to it… and can’t seem to stop seeing and hearing the question… WHY?….

It was at that moment… that this person asked me the wrong question at the wrong time… “Well, who are you asking the question too?” I repeated it back to her… “Who am I asking the question too?”… “What do you mean… Who am I asking the question too?” I knew good and well who they were referring too… I just wanted them to say it… Silence…

At that moment I toyed with the idea of playing along and ignoring it… letting it go… But I just couldn’t! I am 20 months into this mess… and it has weighed heavy on me since day one… and the burden has gotten heavier since then. It seem insurmountable at times.

“Why don’t you just say who you mean! Why don’ t you stop dancing around ‘who’ you think I should be asking the question too!” I barked! “You want me to say ‘God’ … You want to know if I’ve asked God ‘Why?'”

“Well… I’ve asked God… Why have you let my son get this terrible disease?”

“Why have you allowed this torture to go on with me… (and others) and my son?”

“Why … Why… Why…….”

“And I don’t hear anything when I ask….”

“Why don’t YOU ask him for me and let me know what he says!” I cried into the phone.

The fact of the matter is… God or no God… my son has this condition. I don’t know why? If there is a God… then he should know why! And the common thought is – amongst “God fearing Christians” is that There is a God… AND … That God is omniscient & omnipotent (all knowing and all powerful). If there truly were a God… and I would have NO problems believing there is… Why (there’s that damning question again!) doesn’t he just “heal” Christopher’s (and all of the other) congenital glaucoma cases in the world right now? If that happened… We would all go out and “Proclaim” the good news and there would be so many conversions it would replace the “Clinton v. Barrack” spectacle in the news!

Yeah… yeah… faith… my faith is just about tapped out. Sorry… but it is. I’m no “Job” … I can’t just keep believing “blindly” that all is well that ends well…

But one comment from that entire conversation keeps sticking out in my mind…

“Who are you asking your questions to?”