August 22, 2007: Something about his eyes
August 23, 2007: Whispers and gut feelings
August 23, 2007- When you bring your baby home from the hospital for the first time, it's supposed to be a joyous occasion. The slow, careful drive from the hospital. Walking up the driveway, unlocking the door, and crossing the threshold into the home. Your home. This is it, son. This is where we live.
We were discharged from St. Peter's Hospital with the boy with cloudy eyes and were sent to the pediatric ophthalmologist's office where he was diagnosed with pediatric glaucoma. Glaucoma in children is a rare condition, affecting about 1 in 10,000 kids. The disease causes high eye pressure, and this pressure damages the optic nerve, leading to blindness if left untreated. The newborn presentation is the most severe. If your kid has glaucoma at birth, he will likely be blind, we were told. Tough luck.
The drive home from the eye doctor's office was a bit surreal. I'm driving, my wife shotgun, and my 2 year-old daughter and 2 day-old son with cloudy eyes riding snug in their seats in the back. We were just told that the boy would likely be blind, and our only hope was to head to Boston to see a glaucoma specialist to attempt to correct the problem.
No joyous homecoming, no fanfare. Just tears. I remember thinking that it wasn't supposed to be like this.
We enter the house, sit down, and take a moment to enjoy the presence of our son and daughter together in our home. My wife immediately got on the phone and called the doctor in Boston. The doctor himself answered the phone (weird, huh?), and an appointment was set up for noon the next day. Calls were made to family members telling them the news. I called a friend whose father was an ophthalmologist in town, and he got back to me. If the doctor here says to go to Boston, you go to Boston. You're in good hands.
We were going to Boston. Homecoming.
Monday, August 29, 2016
Thursday, August 25, 2016
Holding it together in the waiting room
The story so far:
August 22, 2007: Something about his eyes
August 23, 2007: Whispers and gut feelings
August 23, 2007. I was home with our daughter getting ready to come to St. Peter's Hospital to take my wife and son home for good. At the hospital, the pediatrician came in to discharge the boy. My wife made a request, but she was insistent enough for it to be an order, "Can you take a really good look at his eyes? A really, really good look?"
The pediatrician left the room with our son to have the benefit of the better lighting in the nursery. She came back and reported that indeed his eyes were cloudy. My wife called me at home with the news: the doctor thinks our son has either cataracts or glaucoma, and she was going to make a few calls and get back to us soon.
I got to the hospital, and we packed up our belongings and got ready to leave St. Pete's with our son and his big sister.
Then the phone rang in the hospital room. It was the pediatrician instructing us to head over to the pediatric ophthalmologist's office right away. Don't go home with your new baby, but go right to the eye doctor's office. They were waiting for us.
Things were getting serious.
We arrived at the pediatric ophthalmologist's office and filled out the obligatory paperwork. We waited, our tiny family of four, playing with the toys and nervously reading the books to our 2 year-old daughter and our 2 day-old son with blue, cloudy eyes. Something was up with the boy's eyes, and we knew it was not good. We were anxious as we were called into a room, and we gave our son's short history to the assistant. Normal pregnancy. Normal birth. Cloudy looking eyes. Here we are.
An examination was done by the assistant, and then the doctor made his entrance. Another round of history taking, and another examination. We were told that our son may have glaucoma. Drops were administered to the boy's eyes so his intraoccular pressure could be checked. We were given a book about childhood eye diseases and instructed to read the chapter about pediatric glaucoma while we waited in the waiting room. (Funny, the chapter had been written by the very doctor who was examinating our son.)
While in the waiting area we read about our son's possible condition. There was one sentence in particular that brought us to tears. Something about the newborn presentation of glaucoma being particularly severe, and children who present with glaucoma at birth will be blind. Blind.
Now, I'm no genius. But who the fuck in their right mind tells parents that their child will be blind by having them read a chapter in a book? In a waiting room? With other people around? You want to see a couple thirty-somethings cry? Tell them their 2 day-old son will be blind in the doctor's office waiting room. There must be a course in medical school that this guy missed. Something like, "How to tell parents shitty things about their child's medical condition" or "How not to be an asshole."
Anyway, we were brought back into the exam room, and our son had his eye pressure checked. Another doctor was brought in, and discussions were had. Consultations were made. Waiting and anxiety and attempts at holding ourselves together continued.
We had a diagnosis: pediatric glaucoma. Our son's condition was severe enough (and rare enough) to warrant a trip to Boston to see a specialist to manage this condition. We were referred to Dr. David Walton, and sent home with our children and a phone number to call to begin our journey.
(The doctor who had us sit in the waiting room made at least one right move that day. He sent us to Dr. Walton.)
August 22, 2007: Something about his eyes
August 23, 2007: Whispers and gut feelings
August 23, 2007. I was home with our daughter getting ready to come to St. Peter's Hospital to take my wife and son home for good. At the hospital, the pediatrician came in to discharge the boy. My wife made a request, but she was insistent enough for it to be an order, "Can you take a really good look at his eyes? A really, really good look?"
The pediatrician left the room with our son to have the benefit of the better lighting in the nursery. She came back and reported that indeed his eyes were cloudy. My wife called me at home with the news: the doctor thinks our son has either cataracts or glaucoma, and she was going to make a few calls and get back to us soon.
I got to the hospital, and we packed up our belongings and got ready to leave St. Pete's with our son and his big sister.
Then the phone rang in the hospital room. It was the pediatrician instructing us to head over to the pediatric ophthalmologist's office right away. Don't go home with your new baby, but go right to the eye doctor's office. They were waiting for us.
Things were getting serious.
We arrived at the pediatric ophthalmologist's office and filled out the obligatory paperwork. We waited, our tiny family of four, playing with the toys and nervously reading the books to our 2 year-old daughter and our 2 day-old son with blue, cloudy eyes. Something was up with the boy's eyes, and we knew it was not good. We were anxious as we were called into a room, and we gave our son's short history to the assistant. Normal pregnancy. Normal birth. Cloudy looking eyes. Here we are.
An examination was done by the assistant, and then the doctor made his entrance. Another round of history taking, and another examination. We were told that our son may have glaucoma. Drops were administered to the boy's eyes so his intraoccular pressure could be checked. We were given a book about childhood eye diseases and instructed to read the chapter about pediatric glaucoma while we waited in the waiting room. (Funny, the chapter had been written by the very doctor who was examinating our son.)
While in the waiting area we read about our son's possible condition. There was one sentence in particular that brought us to tears. Something about the newborn presentation of glaucoma being particularly severe, and children who present with glaucoma at birth will be blind. Blind.
Now, I'm no genius. But who the fuck in their right mind tells parents that their child will be blind by having them read a chapter in a book? In a waiting room? With other people around? You want to see a couple thirty-somethings cry? Tell them their 2 day-old son will be blind in the doctor's office waiting room. There must be a course in medical school that this guy missed. Something like, "How to tell parents shitty things about their child's medical condition" or "How not to be an asshole."
Anyway, we were brought back into the exam room, and our son had his eye pressure checked. Another doctor was brought in, and discussions were had. Consultations were made. Waiting and anxiety and attempts at holding ourselves together continued.
We had a diagnosis: pediatric glaucoma. Our son's condition was severe enough (and rare enough) to warrant a trip to Boston to see a specialist to manage this condition. We were referred to Dr. David Walton, and sent home with our children and a phone number to call to begin our journey.
(The doctor who had us sit in the waiting room made at least one right move that day. He sent us to Dr. Walton.)
Wednesday, August 24, 2016
Whispers and gut feelings
August 23, 2007. Our son was born the day before, and we were starting to realize that his eyes were different. They were cloudy. They just didn't look right.
I can't remember who brought it up first. It must have happened in one of those small, whispered conversations that occur between a married couple. "What do you think of his eyes? Have you noticed his eyes?"
"Yes, they look different."
Something was different about the boy's eyes. He was perfect in every way - 9 pounds, 10 ounces, big head, and light colored hair. But he kept his eyes closed, and when they finally did open, they were cloudy. They saw nothing.
We were in St. Peter's Hospital on the maternity floor. One of the nurses came in to check on us while we were hanging in the hospital room. We asked her to take a look at the boy's eyes and check if anything looked funny. She held my son, looked at his eyes, and reported that the grey, cloudy blobs were simply his eye color. Nothing to worry about.
Case closed, right? Nope.
You know when you have a gut feeling? Something that just tears at you and grabs you and won't let go? This was one of those feelings. My wife and I were not satisfied with the nurse's assessment of my son's eyes.
We couldn't let it go.
I can't remember who brought it up first. It must have happened in one of those small, whispered conversations that occur between a married couple. "What do you think of his eyes? Have you noticed his eyes?"
"Yes, they look different."
Something was different about the boy's eyes. He was perfect in every way - 9 pounds, 10 ounces, big head, and light colored hair. But he kept his eyes closed, and when they finally did open, they were cloudy. They saw nothing.
We were in St. Peter's Hospital on the maternity floor. One of the nurses came in to check on us while we were hanging in the hospital room. We asked her to take a look at the boy's eyes and check if anything looked funny. She held my son, looked at his eyes, and reported that the grey, cloudy blobs were simply his eye color. Nothing to worry about.
Case closed, right? Nope.
You know when you have a gut feeling? Something that just tears at you and grabs you and won't let go? This was one of those feelings. My wife and I were not satisfied with the nurse's assessment of my son's eyes.
We couldn't let it go.
Sunday, August 21, 2016
Something about his eyes
August 22, 2007. It was my 9th wedding anniversary. But we didn't celebrate it. Our son had just been born the night before, and we were celebrating his new life.
I awoke early that day, unable to sleep from all the excitement the night before. (We strolled into St. Peter's Hospital a little after 10 pm, and the boy was born just before 11. He came out like vaginal cannon ball.)
That first night of his life was a blur. Doctors and nurses and holding him and looking at him. Touching his miniature feet and hands. Looking at his eyes.
Something about the eyes.
They remained closed much of the time that first night. There may have been a moment or two when the eyes blinked, but only a quick moment. There was something about the eyes. My wife knew it. I knew it. We just didn't know what it was about his eyes. Just...something.
So on my 9th anniversary, I got up and fed my 2 year-old daughter. I got her dressed, and brought her to meet her new little brother. The hospital scene was typical; bassinet beside the bed, and my son being held by his exhausted but beautiful mother. And the boy and his big sister met for the first time.
Still, there was something about the eyes.
Our room at St. Pete's looked over a courtyard. Not the best vista, but we weren't too interested in the view. While we were hanging out and laughing and holding and loving our children, I took a moment and brought my son over to the window, just to show him the sky, the bricks, the clouds, and the world.
Finally he opened his eyes, and I could see them very clearly. He kept them open, looking right up into the unbelievable blue sky. His eyes were cloudy. Grey. Mirrors of the clouds that gently hung in the blue August sky above. Slightly moving around, as if he was searching for something that wasn't there. His eyes were cloudy.
These eyes were blind.
I awoke early that day, unable to sleep from all the excitement the night before. (We strolled into St. Peter's Hospital a little after 10 pm, and the boy was born just before 11. He came out like vaginal cannon ball.)
That first night of his life was a blur. Doctors and nurses and holding him and looking at him. Touching his miniature feet and hands. Looking at his eyes.
Something about the eyes.
They remained closed much of the time that first night. There may have been a moment or two when the eyes blinked, but only a quick moment. There was something about the eyes. My wife knew it. I knew it. We just didn't know what it was about his eyes. Just...something.
So on my 9th anniversary, I got up and fed my 2 year-old daughter. I got her dressed, and brought her to meet her new little brother. The hospital scene was typical; bassinet beside the bed, and my son being held by his exhausted but beautiful mother. And the boy and his big sister met for the first time.
Still, there was something about the eyes.
Our room at St. Pete's looked over a courtyard. Not the best vista, but we weren't too interested in the view. While we were hanging out and laughing and holding and loving our children, I took a moment and brought my son over to the window, just to show him the sky, the bricks, the clouds, and the world.
Finally he opened his eyes, and I could see them very clearly. He kept them open, looking right up into the unbelievable blue sky. His eyes were cloudy. Grey. Mirrors of the clouds that gently hung in the blue August sky above. Slightly moving around, as if he was searching for something that wasn't there. His eyes were cloudy.
These eyes were blind.
Tuesday, January 26, 2016
They Must Think We Are Crazy. Or Idiots.
Thinking about the upcoming vote for a refurbished Albany High School, I've encountered many people who will vote "Yes" and many who will vote "No." The naysayers say that the city's residents are overtaxed as it is, and throwing money at a problem (AHS graduation rate currently stands at about 59%) won't solve it.
I say the building is falling down, and we, as a city, have a moral and civic obligation to our young citizens to provide them with a safe and functional school building in which they can attend class.
A recent article in the Albany Times Union stated that the recent fighting and secrecy of the school board, combined with super high taxes, will likely make many families flee for the safe confines of the suburbs.
We choose to stay and fight for Albany High School and its students. We choose to support this incredible school and the many opportunities that it will give - and has given - to our children and the students that attend AHS. The naysayers think we'll flee for the 'burbs.
They must think we're crazy. Or idiots.
Why would we stay in a district that graduates only 50% of its students in 4 years? Why would we stick around, with a school board that operates in secrecy (as evidenced by the recent dismissal of the district superintendent), and a school that is in desperate need of repair? The high school is falling down! Your children will get wet as the roof continues to leak upon them. Get to Delmar! Quick. Stick around and you must by crazy. Or an idiot.
We're crazy. We are crazy for the incredible teachers who work with our children and us to ensure that they get a solid education. We are crazy for the programs that allow my 4th grader to participate in the AHS musical alongside middle and high school students. She also performs in the marching band with many of these same children. Our child's reading teacher supported her as she competed in the district spelling bee at Hackett Middle School.
We are crazy for the community that is built around our school. We have built lifelong friendships with many of the families in our school and in other schools in the district. We're crazy for the many different cultures that our children are exposed to. We are crazy that when our child falls in the schoolyard, an older child is there to help scoop him up and dust him off.
We stood with our child's first and second grade teacher weeks after the massacre at Sandy Hook, and shared our emotions as we understood the love and devotion it takes to guide these kids. Our teachers love our kids, and they let our children know it.
We are crazy about our children's school and look forward to the opportunities that they will have when they get to Albany High School.
The naysayers think we are crazy to support such a project, to make Albany High School a modern and safe facility for the students who attend class there. They think we're crazy to support Albany High School.
We think you'd be crazy not to.
Tuesday, March 3, 2015
Email Your Children Right Now
I'm the King of the House. Why?
Because I set up an email address for each of my kids. I have three kids. None of them use email. They're too little - just 9, 7, and 4 years old. They don't even know that they have an email address.
But they do have an email address.
I set each of my kids up with an email address a couple years ago. And this is what I do with them (and why I am the King of the House).
I email my kids from time to time. When I have a quick minute at work, I send an email to one of my kids. Maybe my son had a good soccer goal. I'll email him and tell him how proud I am with his hard work in soccer. My 9 year-old won the school spelling bee. I sent her an email to tell her how proud I am of her.
My little one simply needs a lot of love - she gets lost in the shuffle a lot, because she's the baby. I simply send her a quick email that says how much I love her.
My kids also build a lot of things out of Legos or Magformers, and they draw a lot. When they are done projects, they typically ask me to take a picture of their creations. And I do. And then I send it to them via email, so they will have a copy of the pic to look at when they get older.
When my kids get older, they'll want an email address, and I'll show them how to log on and use email. I imagine when they first log on, they'll be happy to read through the emails from their daddy about how much they're loved and how proud I am of them.
And that makes me the King of the House. Try it yourself, and maybe you'll become the King (or Queen) of Your House.
Because I set up an email address for each of my kids. I have three kids. None of them use email. They're too little - just 9, 7, and 4 years old. They don't even know that they have an email address.
But they do have an email address.
I set each of my kids up with an email address a couple years ago. And this is what I do with them (and why I am the King of the House).
I email my kids from time to time. When I have a quick minute at work, I send an email to one of my kids. Maybe my son had a good soccer goal. I'll email him and tell him how proud I am with his hard work in soccer. My 9 year-old won the school spelling bee. I sent her an email to tell her how proud I am of her.
My little one simply needs a lot of love - she gets lost in the shuffle a lot, because she's the baby. I simply send her a quick email that says how much I love her.
My kids also build a lot of things out of Legos or Magformers, and they draw a lot. When they are done projects, they typically ask me to take a picture of their creations. And I do. And then I send it to them via email, so they will have a copy of the pic to look at when they get older.
When my kids get older, they'll want an email address, and I'll show them how to log on and use email. I imagine when they first log on, they'll be happy to read through the emails from their daddy about how much they're loved and how proud I am of them.
And that makes me the King of the House. Try it yourself, and maybe you'll become the King (or Queen) of Your House.
Monday, March 2, 2015
I Got a Thousand Girls that Like Me
The other day my son, the 7 year-old, got very serious and asked me, " Dad, do girls decide when you get married? Do girls just tell you that you are getting married to them?"
I chuckled a bit. "No, buddy. People get married when a man and a woman decide together to get married." (Now, a man and a man may get married, and a woman and a woman may get married. I get it, but I wasn't about to get into that with the boy.)
"Good," the boy said, "because there's a thousand girls at school that like me." He then rattled off a bunch of names of girls in his class.
That kid is something special.
I chuckled a bit. "No, buddy. People get married when a man and a woman decide together to get married." (Now, a man and a man may get married, and a woman and a woman may get married. I get it, but I wasn't about to get into that with the boy.)
"Good," the boy said, "because there's a thousand girls at school that like me." He then rattled off a bunch of names of girls in his class.
That kid is something special.
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