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.

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…

I just wanted to take a second to say “Thanks so much!” for the emails of support that we’ve received since starting this blog.  I don’t know how so many people have read it so quickly… but our story has touched some of you too.  I thank you for the stories of encouragement and hope; for explaining, compassionately that “you’ve been there”; for letting us know that there is someone out there that goes through what we go through.

This nightmare is so rare… there just aren’t many people (especially – locally) who can relate, empathize, or even come close to understanding what this all entails… It is so hard to share – even with our close friends and family.  And it is even harder to ‘bear’ alone.

So… Thanks again.

I would like to share snippets of the emails I received (I hope you don’t mind)… but I will, of course, honor the privacy of the person’s who sent it.  I will not allow the names included in the emails to be put here.  I just think they are worth sharing.  Maybe, someone else out there is having some of the same trials and tribulations… and it would be nice to see the warmth and understanding the rest of us have for each of us going through this.  So… here are a couple of snippets from the responses I received:

“I can’t tell you how much your story relates to ours.  As I read your blog, all the emotions and frustrations that my husband and I have experienced with our son came flooding back, and I couldn’t help but sit and read and cry along with you.  Glaucoma is such a horrible sentence, and I suppose someone else would say there is alot worse things that our children could have.  All I know is what we deal with daily, but I just wanted to give you an update on my son, in the hopes that it may give you and your wife some hope as well.  …We were given the same option, Valve implants.  Nothing else had worked and (after) 11 surgeries his pressures were still high.  Round the clock drops and patching were our life.  At 18 mos. our doctor decided implants would be our best bet.  We were crushed.  I could not bear the thought of anything foreign in my child’s eye.  But, I am here today, 9 years later, telling you that the implants have been a blessing.  We saw instant results.  We still have to maintain a drop regimen, but all in all the implants by far have been the best thing that could have happened to our son.  I wish we had chose them right from the start…  Again,  I just wanted to write you and your wife to let you know that there is hope.  Eventually, you will settle into a routine of acceptance, this is not to say that you won’t have worries and concerns, but life will get easier.”

And another wrote:

“Wow, I just read your blogs.  It’s amazing how we can all relate to the same things. My daughter is 5 now, and was diagnosed at 13 months, but was born with the disease. She lived with extremely high pressure, migraines and cloudy corneas for 13 months…she saw my face for the first time 2 days after her first surgery.  I’ve heard from so many people the same line….God only gives you as much as you can handle..I also believe its a load!!!  …   I don’t know how God thought I (can handle all that has happened…) but I did, and I have, for the past 4 years of surgeries and endless eye drops, glasses, patches….its a never ending battle with this disease.  I used to be depressed and sad all the time…I’m 24 years old!!! I’m not supposed to be depressed!!! But I’ve met so many people that I can relate to…who have the same worries I have..who go through the same daily struggles!  …   I hope your son does well. I read about the valves in your blog. They’re not as bad as they seem. It helped my daughter out so much. Her pressures havent been over 17-18 since she’s had them in. I’m amazed!”
Well… Once again, “Thank you…”  It most definitely helps to hear from all of you.  We are still extremely depressed… and we cry often… But it is really great to hear encouraging stories from others who have been there!  Good luck… to all of you too!  We will keep you all in our thoughts!
Chris