There are some movie quotations that almost everyone recognizes.
"Frankly, my dear, I don't give a d@%*."
"Go ahead, make my day."
"Toga! Toga! Toga!"
In my inner circle (meaning my mom, my sister, and my husband), we like to use obscure movie quotations and references in everyday conversation, to make valid points and to express ourselves clearly. As a result, we sometimes communicate using sentences that probably wouldn't make sense to anyone else. Unless, of course, that "anyone else" was a movie buff.
To demonstrate what I am talking about (if I haven't lost you, already), I've decided to share my top five favorite quotations used by my family and how we relate them to everyday life.
"And that's when the big bucks start rollin' in!" ~ Coming to America
Maurice (Louie Anderson) explains the fast food hierarchy to McDowell's new employee, Hakeem (Eddie Murphy). He says, "Hey, I started out mopping floors... but now I'm washing lettuce. Soon, I will be on fries and then the grill. And pretty soon, I'll make Assistant Manager. And that's when the big bucks start rollin' in!"
We usually use this one, sarcastically, when we are discussing ways to improve our financial standing, by taking baby steps.
EXAMPLE: "Don't worry. Soon it will be September, and I can sell the boys' old winter things on ebay... and that's when the big bucks start rolling in!"
"I think I'll start a paper route, right now." ~ Pee-Wee's Big Adventure
This is the line, announced by Pee-Wee Herman (dressed as a nun), who is about to steal his beloved bike back from a movie set. He thinks by saying that he'll start a paper route, he can just ride off without any trouble.
This one we use as a reference when someone does something underhanded or tries to avoid an issue, thinking no one will notice.
EXAMPLE: "Did Henry ask to take a snack to bed?"
"Nope. He just started a paper route and took the cookies into the room!"
"Those little lights aren't twinkling, Clark." ~ Christmas Vacation
I love when Clark W. Griswold's father-in-law, Art, points out this minor detail after Clark puts on the most magnificent Christmas light display in the history of the world.
This is used when someone is being nitpicky.
EXAMPLE: "When you unloaded the dishwasher, you forgot this fork."
"Oh, thanks. And I bet the little lights aren't twinkling, either!"
"It's not my fault that you wouldn't play catch with your father!" ~ Field of Dreams
Terrence Mann (James Earl Jones) exclaims this line when Ray (Kevin Costner) tells him that reading Mann's book caused Ray to boycott playing baseball with his dad.
We like to use this, when someone is being used as a scapegoat.
EXAMPLE: "Great, Mom. You called, to chat and I didn't get any laundry done."
"Oh, please. It's not my fault that you wouldn't play catch with your father!"
Foam Hats ~ Dumb and Dumber
Okay, so this isn't a quotation. "Foam hats" refers to the scene in Dumb and Dumber, when Lloyd goes to the store, with the last of the duo's money. After being told to only buy necessities, it shows him walking with a bag of goodies and wearing a giant, foam, cowboy hat.
This is used, exclusively, between my husband and I, whenever he goes to the store and strays from both the budget and my list.
EXAMPLE: "Michael, why did you buy Reese's cups and a Mad Magazine??"
"Don't be mad! I only bought a few foam hats!!"
Many times, we have said these things in public, only to see people give each other questioning looks, like, "Isn't she a little old for a paper route?" "They don't sell foam hats here!" or "What does cooking dinner have to do with playing catch?" But, that's just us, my quirky family. I understand them and they understand me. I hope that you are enjoying reading about them. I'll try to keep you entertained. I may be just a disgruntled mom who started a blog, but I am hoping to get a lot of followers and then maybe even a book deal.
'Cause that's when the big bucks start rollin' in!
Sunday, June 27, 2010
Monday, June 21, 2010
It takes a village...
Once upon a time, a little boy was born. He was a happy boy. He giggled and cooed. He was a bit precocious. He liked to run and to climb and to explore. He gave his mom hugs and promised to buy her "coffee drinks" and "pretty dresses," when he grew up. He shared cookies with his granddad, who lived with his family, and watched "Old Yeller" over and over again. He was a happy boy.
The little boy grew. He went to school, and he made friends. He became an altar boy, a job that he took very seriously. He played Little League and his coaches and teammates called him "Smiles" for obvious reasons. He tried to find ways to embarrass his teenage sister, as little brothers do. He became an idol and role model to his little sister, as big brothers do. He liked to make his sisters laugh, doing celebrity impressions and reenacting his favorite parts of movies. His family swore that he would grow up to be a comedian. He was a happy boy.
Then, one day, the boy started high school. He made the golf team as a Freshman and that made him very happy. But then, his grades began to slip, and he was no longer able to participate on the golf team. He stopped making his family laugh, he stopped smiling, and he became withdrawn and angry. He was a sad boy.
When his older sister came home from college, one Thanksgiving, she discovered, through a friend, that her brother had been targeted by bullies. Apparently, when the boy made the golf team, he took the position previously held by a Junior. This Junior and a few of his friends, cornered the boy daily. They had been humiliating and torturing the boy since the beginning of the school year. When the abuse resulted in the low grades that cost the boy his position on the golf team, they turned to psychological warfare. They called him "stupid," and "worthless." He was a very sad boy.
When his parents began alerting the authorities, the school, and their Church about what was happening, life changed dramatically. One bully was expelled, but the others were given a slap on the wrist. When the boy's father asked the principal why the other bullies were not punished as severely, she replied, "Well, their parents are upstanding members of our community and their support is valuable to Delone Catholic High School."
The boy changed schools.
The boy's Parish priest was confronted about the church's intramural basketball team, that the boy played on, because one of the bullies was also on the team. The priest, like the principal, referred to the bully's family as an influential benefactor to the Parish.
The boy and his family stopped going to Church.
Friends that the boy's family had had for years, stopped visiting. They were supporters of the Church and the school, and did not understand why the boy's family needed to rock the boat. Instead of supporting the boy's bravery, members of the community began condemn him for challenging the perfect world in which they all lived. The boy's parents began to argue. They argued over how everything could have been prevented. They argued over treatment of the boy.
The boy's parents divorced.
When the boy graduated high school, he moved away. His visits home became more and more sparse, and then they stopped all together. He said that his home was no longer his home. He said that the town he had grown up in was never supportive of him. Everything was a reminder of his past.
It has been said, that it takes a village to raise a child. While that may be true, it can also be said that it can take a village to destroy a child. In fact, a village has enough power to destroy a family.
It has been a little over ten years since the episodes of abuse that my brother endured at Delone Catholic High School. I don't think that any of those who are familiar with what happened, know of the lasting effects it had on our family. My brother was a victim, yet he was never treated as such. The loyalties to the town's only Catholic high school in our area, are disturbing. They are loyalties that are stronger than morals, friendships, and the love for a child. Our family crumbled, yet the school, and the community, still stand, proudly, full of hypocrisy and greed.
Saturday was my brothers birthday. He turned 26 years old. I haven't seen him in over two years. His nephews are growing up without him. I miss him everyday. He was such a happy boy.
The little boy grew. He went to school, and he made friends. He became an altar boy, a job that he took very seriously. He played Little League and his coaches and teammates called him "Smiles" for obvious reasons. He tried to find ways to embarrass his teenage sister, as little brothers do. He became an idol and role model to his little sister, as big brothers do. He liked to make his sisters laugh, doing celebrity impressions and reenacting his favorite parts of movies. His family swore that he would grow up to be a comedian. He was a happy boy.
Then, one day, the boy started high school. He made the golf team as a Freshman and that made him very happy. But then, his grades began to slip, and he was no longer able to participate on the golf team. He stopped making his family laugh, he stopped smiling, and he became withdrawn and angry. He was a sad boy.
When his older sister came home from college, one Thanksgiving, she discovered, through a friend, that her brother had been targeted by bullies. Apparently, when the boy made the golf team, he took the position previously held by a Junior. This Junior and a few of his friends, cornered the boy daily. They had been humiliating and torturing the boy since the beginning of the school year. When the abuse resulted in the low grades that cost the boy his position on the golf team, they turned to psychological warfare. They called him "stupid," and "worthless." He was a very sad boy.
When his parents began alerting the authorities, the school, and their Church about what was happening, life changed dramatically. One bully was expelled, but the others were given a slap on the wrist. When the boy's father asked the principal why the other bullies were not punished as severely, she replied, "Well, their parents are upstanding members of our community and their support is valuable to Delone Catholic High School."
The boy changed schools.
The boy's Parish priest was confronted about the church's intramural basketball team, that the boy played on, because one of the bullies was also on the team. The priest, like the principal, referred to the bully's family as an influential benefactor to the Parish.
The boy and his family stopped going to Church.
Friends that the boy's family had had for years, stopped visiting. They were supporters of the Church and the school, and did not understand why the boy's family needed to rock the boat. Instead of supporting the boy's bravery, members of the community began condemn him for challenging the perfect world in which they all lived. The boy's parents began to argue. They argued over how everything could have been prevented. They argued over treatment of the boy.
The boy's parents divorced.
When the boy graduated high school, he moved away. His visits home became more and more sparse, and then they stopped all together. He said that his home was no longer his home. He said that the town he had grown up in was never supportive of him. Everything was a reminder of his past.
It has been said, that it takes a village to raise a child. While that may be true, it can also be said that it can take a village to destroy a child. In fact, a village has enough power to destroy a family.
It has been a little over ten years since the episodes of abuse that my brother endured at Delone Catholic High School. I don't think that any of those who are familiar with what happened, know of the lasting effects it had on our family. My brother was a victim, yet he was never treated as such. The loyalties to the town's only Catholic high school in our area, are disturbing. They are loyalties that are stronger than morals, friendships, and the love for a child. Our family crumbled, yet the school, and the community, still stand, proudly, full of hypocrisy and greed.
Saturday was my brothers birthday. He turned 26 years old. I haven't seen him in over two years. His nephews are growing up without him. I miss him everyday. He was such a happy boy.
Saturday, June 12, 2010
The Great Outdoors....
You would never call me "one with nature." I am not a fan of the outdoors. I don't mean the "outside." Give me the sun, some sand, and the ocean any day. I mean the "outdoors"... as in tall grass, lots of trees, creepy crawlies, and wild animals that require traps to be set.
I will never own a cabin.
I will never live somewhere in which a view of the road is blocked by trees.
You will never, ever, hear me say, "Yeah, Michael and I are packing up our sleeping bags and taking the boys camping this weekend."
Fortunately, I married a man who shares my opinions. If he can't plug in the charger to his Nintendo DS and I can't plug in my hair dryer, we aren't going.
I am writing this while on our summer vacation with my husband, my boys, my mom, and my stepdad, Jim. My mom and Jim treated us to two weeks in a lake house at Deep Creek Lake. This is the third time we've been to the lake and we love it. The house is gorgeous - air conditioning, floor to ceiling windows, remote control fireplace, dishwasher, washer/dryer, an outdoor hot tub, and two bathrooms. My husband and I were discussing the other day how Deep Creek Lake is as close as we get to "roughing it." And by roughing it, I mean we have to walk in grass that hits just above our ankles to get to the dock and we have to wear swim shoes, because the bottom of the lake is muddy and rocky.
We are not snobs; we are too poor to be snobs. We just think that God gave us mattresses, air conditioning, and running water for a reason and we should take advantage of it.
That's not to say that I am an anti-environmentalist. I love our planet and I do what I can to save it. I recycle, I turn the water off while I brush my teeth, and I do... other stuff. I appreciate nature, even if I don't like being in it.
Last night, after my mom and Jim went to bed and the boys fell asleep, Michael and I took the baby monitor and some iced tea, and headed out to the hot tub. As the warm bubbles surrounded us and the multiple jets massaged our backs, we sat back and observed the outdoors in all it's glory. The cool wind blowing through our hair, the chirping of the evening bugs, the smell of the lake a few feet away, and the clear sky, lit up with stars, was all quite breathtaking.
"Wow," Michael said, "This is just gorgeous."
I took a deep relaxing breath, closed my eyes, and agreed.
About three minutes later, I opened my eyes.
"Michael, I'm kind of hot. Let's go back in to the air conditioning."
"Oh, good," he said, clearing the side of the hot tub in one leap, to the deck. "I was hoping you'd say that. Let's go watch some T.V."
*sigh* We're soulmates I tell ya.
I will never own a cabin.
I will never live somewhere in which a view of the road is blocked by trees.
You will never, ever, hear me say, "Yeah, Michael and I are packing up our sleeping bags and taking the boys camping this weekend."
Fortunately, I married a man who shares my opinions. If he can't plug in the charger to his Nintendo DS and I can't plug in my hair dryer, we aren't going.
I am writing this while on our summer vacation with my husband, my boys, my mom, and my stepdad, Jim. My mom and Jim treated us to two weeks in a lake house at Deep Creek Lake. This is the third time we've been to the lake and we love it. The house is gorgeous - air conditioning, floor to ceiling windows, remote control fireplace, dishwasher, washer/dryer, an outdoor hot tub, and two bathrooms. My husband and I were discussing the other day how Deep Creek Lake is as close as we get to "roughing it." And by roughing it, I mean we have to walk in grass that hits just above our ankles to get to the dock and we have to wear swim shoes, because the bottom of the lake is muddy and rocky.
We are not snobs; we are too poor to be snobs. We just think that God gave us mattresses, air conditioning, and running water for a reason and we should take advantage of it.
That's not to say that I am an anti-environmentalist. I love our planet and I do what I can to save it. I recycle, I turn the water off while I brush my teeth, and I do... other stuff. I appreciate nature, even if I don't like being in it.
Last night, after my mom and Jim went to bed and the boys fell asleep, Michael and I took the baby monitor and some iced tea, and headed out to the hot tub. As the warm bubbles surrounded us and the multiple jets massaged our backs, we sat back and observed the outdoors in all it's glory. The cool wind blowing through our hair, the chirping of the evening bugs, the smell of the lake a few feet away, and the clear sky, lit up with stars, was all quite breathtaking.
"Wow," Michael said, "This is just gorgeous."
I took a deep relaxing breath, closed my eyes, and agreed.
About three minutes later, I opened my eyes.
"Michael, I'm kind of hot. Let's go back in to the air conditioning."
"Oh, good," he said, clearing the side of the hot tub in one leap, to the deck. "I was hoping you'd say that. Let's go watch some T.V."
*sigh* We're soulmates I tell ya.
Friday, June 4, 2010
Time to meet my elephant...
It's been said that when there is an elephant in the room, you should introduce it. For those of you reading my blog, you know that I have mentioned Noonan Syndrome and I am sure many of you have no idea what I am talking about. Since I wanted you to get to know us first, I have chosen to delay telling our story. But I think it's time.
When Henry was six weeks old, we found out that he has Pulmonary Valvular Stenosis (PVS). We came home from the Cardiologist and as I tried to explain to my mom what was wrong with her grandson, I realized that I couldn't. When the doctor spoke with Michael and I, all I heard was, "Congenital heart defect," and after that it just seemed like static in my ears. So I turned to my friend, Google for assistance. As I attempted to sort through reliable medical websites, I noticed that "Noonan Syndrome" was often listed as a factor regarding PVS. Curiosity got the best of me and I clicked a link, since I had never heard of Noonan Syndrome. What I began to read was a bit overwhelming.
- Delayed puberty (I got my period at 17, and went from a B to a C cup, naturally, at 21.)
- Short stature (I'm barely 5'.)
- Large, widely spaced eyes (Umm... have you met me?)
As the list went on and as I read it aloud, I began to have an odd feeling in my stomach. When I finished, my mom and I spoke at the same time.
Mom: "That sounds like you!"
Me: "This sounds like me!"
I became convinced that I had this genetic condition and had passed it on to Henry and possibly to Jack. My husband was skeptical and tried to tell me that I was crazy. But after I made him read the information that I had printed, even he became nervous. In August of 2008, the boys had a joint doctor's visit - Jack for his three year check-up and Henry for his six month. It was at that visit that we found out that Jackson had dropped off of the height chart. I brought up Noonan's to the pediatrician. I'll never forget the look on her face. It wasn't doubt. It was as if she, too, had a moment of clarity. She set up the blood work for the boys. Genetic testing takes five weeks. It was a L-O-N-G five weeks. The call finally came in one September morning.
"Mrs. Corbin, there was a mix up at the lab. You're going to have to bring the boys back in, to be retested."
Nice.
Fast forward ANOTHER five weeks. I still remember it; I was in the kitchen making fettuccine alfredo. Michael was on his way home from work and it was almost 6:00pm. The phone rang.
"Mrs. Corbin, how are you? Sorry to call at this time. Are you in the middle of dinner? Oh, what are you making? That sounds good!"
(Let me give you all a bit of information that I have learned from experience. When a doctor calls you and makes small talk, it's bad news. Good news, they'll tell you right away. Bad news, they like to butter you up.)
On that night, October 23, 2008, we learned that Jackson and Henry, both, have a mutation in the PTPN11 gene - Noonan Syndrome.
So... yeah, thank God for Google.
I went for my blood work the next day. Five weeks later was the Monday after Thanksgiving and the doctor called.
"Mrs. Corbin, how was your holiday? Did you cook, or did you visit relatives?"
Uh-oh.
That was probably the weirdest phone call I had ever received. It's not every day that you find out at age 30, that you have a genetic condition. A genetic condition that is defined by subnormal development and abnormal facial features. I hung up and spent forty-five minutes staring at myself in the mirror, because all of a sudden, I looked like a different person. Geez, after that phone call, I became a different person. This was all supposed to be a hunch - a crazy Internet hunch. And now my boys and myself had a medical condition that we didn't know anything about. I called my mom.
"Mom, I have the gene mutation, too. I have Noonan Syndrome. It was me that gave it to the boys. All three of us have to go to a geneticist at Johns Hopkins, as soon as possible, to be evaluated. I ..."
"--Anna," My mom interrupted, sobbing. "I need to get off the phone for a minute. I just found out that my child has Noonan Syndrome and this is a little hard for me, too."
That moment was when it all became very real. This was really happening and it was going to change our lives.
After going to the geneticist, we got a better handle of what we are dealing with. More testing needed to be done, because Noonan's affects the development of everything - including organs. As it turns out, the boys have numerous health issues as a result of NS. Some that could potentially be life threatening and others that are not as serious.
Emotionally, it was difficult at first. It was hard enough learning at 30 that I've had a genetic condition since birth. But, the fact that I had passed it on to my children? That was the worst feeling in the world. I had a rough couple of months.
I felt sad that this was happening to our family.
I felt angry at all of the kids on the playground when I was a child, who had ever said, "Hey, Shorty - what's wrong with you? Why are you so short? Are you a midget?"
I felt guilty because although I have the same condition, I have had a relatively healthy life and yet my boys have so many problems.
Slowly, as I saw how brave my boys are and how they just eased into the lifestyle of children with NS, my bad feelings faded. Noonan Syndrome is something we have, not who we are. I have not had all of the required testing, to determine if I have any of the health issues relating to Noonan Syndrome. I have chosen to focus on the boys, first. They have a great team of doctors at Johns Hopkins, from Cardiology, Hematology, Genetics, and Endocrinology. They are in good hands. We are learning how to deal with all the issues that they have and all of the issues that they may develop.
I am much more at peace with our situation. God doesn't give you anything that you can't handle. (He must think I am something else!) It's been a year and a half since our diagnosis. I tease my husband, because he is the minority in our house. I have a spontaneous mutation of the PTPN11 gene and had a 50% chance of passing it on to my children. Instead, both of my children inherited it. With Michael's love and my mom's guidance, I have stopped looking at myself as "damaged goods" - which is what I called myself for awhile. I know that these things happen, and they happen for a reason. My boys are awesome. I'm not sure if they know that they have NS or not, but they definitely know that they go to the doctor a lot. And it doesn't even faze them. The Noonan Syndrome Support Group has been wonderful. I can't even begin to describe the comfort of knowing that you are not alone.
My husband and I discovered something, after contacting other families affected by Noonan's, seeing photos of their children, and looking at our boys. Each case of NS is different, but thing is clear: Noonan Syndrome makes for some beautiful babies! Seriously, BEAUTIFUL babies. We can't believe that medical journals would say that these children have "abnormal facial features." In fact, we often wonder, if our boys didn't have Noonan's would they have been as cute??
So, that is our elephant. I am the mother in a family of four and three of us have a rare genetic condition. But I am okay and my boys are okay. If and when the day comes when one of us is not okay, we will be prepared to deal with it. For now, my job is to keep my boys as happy and as healthy as possible. And to make sure they never feel insecure or "different." Fortunately for them, they will always have each other and myself to turn to, as they deal with the many issues that this condition presents. And in our house, at least, "different" happens to be the norm!
We have a ritual that we perform every morning. The boys get dressed, and then look in the mirror, and I say, "Well, how do you look?" Jackson says, "Handsome!" and Henry says, "Pretty!" and I say, "Absolutely." As I watch them walk, confidently, out of their room, I know that they believe what they have said. They believe it, because it's true. They are two pretty handsome boys and they are amazing.
When Henry was six weeks old, we found out that he has Pulmonary Valvular Stenosis (PVS). We came home from the Cardiologist and as I tried to explain to my mom what was wrong with her grandson, I realized that I couldn't. When the doctor spoke with Michael and I, all I heard was, "Congenital heart defect," and after that it just seemed like static in my ears. So I turned to my friend, Google for assistance. As I attempted to sort through reliable medical websites, I noticed that "Noonan Syndrome" was often listed as a factor regarding PVS. Curiosity got the best of me and I clicked a link, since I had never heard of Noonan Syndrome. What I began to read was a bit overwhelming.
- Delayed puberty (I got my period at 17, and went from a B to a C cup, naturally, at 21.)
- Short stature (I'm barely 5'.)
- Large, widely spaced eyes (Umm... have you met me?)
As the list went on and as I read it aloud, I began to have an odd feeling in my stomach. When I finished, my mom and I spoke at the same time.
Mom: "That sounds like you!"
Me: "This sounds like me!"
I became convinced that I had this genetic condition and had passed it on to Henry and possibly to Jack. My husband was skeptical and tried to tell me that I was crazy. But after I made him read the information that I had printed, even he became nervous. In August of 2008, the boys had a joint doctor's visit - Jack for his three year check-up and Henry for his six month. It was at that visit that we found out that Jackson had dropped off of the height chart. I brought up Noonan's to the pediatrician. I'll never forget the look on her face. It wasn't doubt. It was as if she, too, had a moment of clarity. She set up the blood work for the boys. Genetic testing takes five weeks. It was a L-O-N-G five weeks. The call finally came in one September morning.
"Mrs. Corbin, there was a mix up at the lab. You're going to have to bring the boys back in, to be retested."
Nice.
Fast forward ANOTHER five weeks. I still remember it; I was in the kitchen making fettuccine alfredo. Michael was on his way home from work and it was almost 6:00pm. The phone rang.
"Mrs. Corbin, how are you? Sorry to call at this time. Are you in the middle of dinner? Oh, what are you making? That sounds good!"
(Let me give you all a bit of information that I have learned from experience. When a doctor calls you and makes small talk, it's bad news. Good news, they'll tell you right away. Bad news, they like to butter you up.)
On that night, October 23, 2008, we learned that Jackson and Henry, both, have a mutation in the PTPN11 gene - Noonan Syndrome.
So... yeah, thank God for Google.
I went for my blood work the next day. Five weeks later was the Monday after Thanksgiving and the doctor called.
"Mrs. Corbin, how was your holiday? Did you cook, or did you visit relatives?"
Uh-oh.
That was probably the weirdest phone call I had ever received. It's not every day that you find out at age 30, that you have a genetic condition. A genetic condition that is defined by subnormal development and abnormal facial features. I hung up and spent forty-five minutes staring at myself in the mirror, because all of a sudden, I looked like a different person. Geez, after that phone call, I became a different person. This was all supposed to be a hunch - a crazy Internet hunch. And now my boys and myself had a medical condition that we didn't know anything about. I called my mom.
"Mom, I have the gene mutation, too. I have Noonan Syndrome. It was me that gave it to the boys. All three of us have to go to a geneticist at Johns Hopkins, as soon as possible, to be evaluated. I ..."
"--Anna," My mom interrupted, sobbing. "I need to get off the phone for a minute. I just found out that my child has Noonan Syndrome and this is a little hard for me, too."
That moment was when it all became very real. This was really happening and it was going to change our lives.
After going to the geneticist, we got a better handle of what we are dealing with. More testing needed to be done, because Noonan's affects the development of everything - including organs. As it turns out, the boys have numerous health issues as a result of NS. Some that could potentially be life threatening and others that are not as serious.
Emotionally, it was difficult at first. It was hard enough learning at 30 that I've had a genetic condition since birth. But, the fact that I had passed it on to my children? That was the worst feeling in the world. I had a rough couple of months.
I felt sad that this was happening to our family.
I felt angry at all of the kids on the playground when I was a child, who had ever said, "Hey, Shorty - what's wrong with you? Why are you so short? Are you a midget?"
I felt guilty because although I have the same condition, I have had a relatively healthy life and yet my boys have so many problems.
Slowly, as I saw how brave my boys are and how they just eased into the lifestyle of children with NS, my bad feelings faded. Noonan Syndrome is something we have, not who we are. I have not had all of the required testing, to determine if I have any of the health issues relating to Noonan Syndrome. I have chosen to focus on the boys, first. They have a great team of doctors at Johns Hopkins, from Cardiology, Hematology, Genetics, and Endocrinology. They are in good hands. We are learning how to deal with all the issues that they have and all of the issues that they may develop.
I am much more at peace with our situation. God doesn't give you anything that you can't handle. (He must think I am something else!) It's been a year and a half since our diagnosis. I tease my husband, because he is the minority in our house. I have a spontaneous mutation of the PTPN11 gene and had a 50% chance of passing it on to my children. Instead, both of my children inherited it. With Michael's love and my mom's guidance, I have stopped looking at myself as "damaged goods" - which is what I called myself for awhile. I know that these things happen, and they happen for a reason. My boys are awesome. I'm not sure if they know that they have NS or not, but they definitely know that they go to the doctor a lot. And it doesn't even faze them. The Noonan Syndrome Support Group has been wonderful. I can't even begin to describe the comfort of knowing that you are not alone.
My husband and I discovered something, after contacting other families affected by Noonan's, seeing photos of their children, and looking at our boys. Each case of NS is different, but thing is clear: Noonan Syndrome makes for some beautiful babies! Seriously, BEAUTIFUL babies. We can't believe that medical journals would say that these children have "abnormal facial features." In fact, we often wonder, if our boys didn't have Noonan's would they have been as cute??
So, that is our elephant. I am the mother in a family of four and three of us have a rare genetic condition. But I am okay and my boys are okay. If and when the day comes when one of us is not okay, we will be prepared to deal with it. For now, my job is to keep my boys as happy and as healthy as possible. And to make sure they never feel insecure or "different." Fortunately for them, they will always have each other and myself to turn to, as they deal with the many issues that this condition presents. And in our house, at least, "different" happens to be the norm!
We have a ritual that we perform every morning. The boys get dressed, and then look in the mirror, and I say, "Well, how do you look?" Jackson says, "Handsome!" and Henry says, "Pretty!" and I say, "Absolutely." As I watch them walk, confidently, out of their room, I know that they believe what they have said. They believe it, because it's true. They are two pretty handsome boys and they are amazing.
Tuesday, June 1, 2010
Wishing for Ward...
When I started dating my husband, I made myself clear: I did not need special treatment as a woman. I was strong-willed, my own person and I could open my own doors. I wish I could go back to that independent twenty-one year old girl that I was and smack her upside her head.
Little did I know that there would come a day when I would learn that it is a little difficult to open my own door while eight months pregnant, with a two year old on my hip, and my arms filled with a diaper bag, a boobah, and a cup of Cheerios. I also didn't know that when put in that situation, the sight of my husband strolling leisurely to the car (empty handed) would have me teetering on the edge of divorce.
I've said it before, and I'll say it again, women's lib is awesome, but it has taken all of the enjoyment out of the role of a stay at home mom (SAHM to my fellow Facebookers and Bloggers).
Don't get me wrong, I still see myself as an equal. But, what is "equal?" Women are expected to be superheroes. Back when it was acceptable and common to stay home, and raise your own children, THAT was your job. Now that SAHMs are the minority, it's as if we have to work overtime to prove ourselves.
June Cleaver can bite me.
Of course, she could perform all of her duties wearing pearls, with perfectly coiffed hair, in high heels. All June had to do was cook, clean, and occasionally remove Beaver's hand from a jar. Ward did the heavy work. I cook, clean, take care of the boys, refinish furniture, repair appliances, paint baseboards, fix doorknobs, do yard work, and handle our household finances. And then I feel guilty because I only have time to shave my legs a few times a month.
In my husband's defense, he's not useless (necessarily). I choose to over work myself. I feel guilty that the burden of supporting our family lies with him. We live in a society where men and women are both supposed to fulfill the financial responsibilities of a household. Our society makes me feel as though I need to overcompensate by taking on many jobs of the home. I find it interesting that now that the role of full time mom has become so much more difficult, there are less moms doing it. Things were easy for June. She could make friends, because all of the women in her neighborhood were SAHMs, too. I have trouble finding peer interaction for myself or my sons, because I know of few mothers who are home during the day like I am. June was respected in her community, just because she was a devoted wife and a good mother. When I go to parties and state my "profession," the other moms give me a look of pity and say, "Oh, well, the boys will be in school before you know it, and you can go back to work." Ummm.... I really don't want to rush my children's childhoods, but thanks. Even running errands was simpler in the Fifties. All June had to do was throw Wally and the Beav into the back of the family's Ford Fairlane and be on their way. When I take my boys to the grocery store, I have to budget a half hour of time just to get them in and out of their state required car seats.
I do love my job. I love that I will remember every moment of my boys' lives. I guess I just long for a simpler time, when it was good enough for a woman to "just" be a wife and mother. I wish that a successful day for me would be to have the dishes done, the living room vacuumed, and dinner on the table, all while looking fabulous. So, I suppose my animosity toward Mrs. Cleaver stems from the fact that I envy her. I may have once been a feminist, but now I guess, I am just a mom, who wants to be June Cleaver... except for the heels. I hate high heels.
Little did I know that there would come a day when I would learn that it is a little difficult to open my own door while eight months pregnant, with a two year old on my hip, and my arms filled with a diaper bag, a boobah, and a cup of Cheerios. I also didn't know that when put in that situation, the sight of my husband strolling leisurely to the car (empty handed) would have me teetering on the edge of divorce.
I've said it before, and I'll say it again, women's lib is awesome, but it has taken all of the enjoyment out of the role of a stay at home mom (SAHM to my fellow Facebookers and Bloggers).
Don't get me wrong, I still see myself as an equal. But, what is "equal?" Women are expected to be superheroes. Back when it was acceptable and common to stay home, and raise your own children, THAT was your job. Now that SAHMs are the minority, it's as if we have to work overtime to prove ourselves.
June Cleaver can bite me.
Of course, she could perform all of her duties wearing pearls, with perfectly coiffed hair, in high heels. All June had to do was cook, clean, and occasionally remove Beaver's hand from a jar. Ward did the heavy work. I cook, clean, take care of the boys, refinish furniture, repair appliances, paint baseboards, fix doorknobs, do yard work, and handle our household finances. And then I feel guilty because I only have time to shave my legs a few times a month.
In my husband's defense, he's not useless (necessarily). I choose to over work myself. I feel guilty that the burden of supporting our family lies with him. We live in a society where men and women are both supposed to fulfill the financial responsibilities of a household. Our society makes me feel as though I need to overcompensate by taking on many jobs of the home. I find it interesting that now that the role of full time mom has become so much more difficult, there are less moms doing it. Things were easy for June. She could make friends, because all of the women in her neighborhood were SAHMs, too. I have trouble finding peer interaction for myself or my sons, because I know of few mothers who are home during the day like I am. June was respected in her community, just because she was a devoted wife and a good mother. When I go to parties and state my "profession," the other moms give me a look of pity and say, "Oh, well, the boys will be in school before you know it, and you can go back to work." Ummm.... I really don't want to rush my children's childhoods, but thanks. Even running errands was simpler in the Fifties. All June had to do was throw Wally and the Beav into the back of the family's Ford Fairlane and be on their way. When I take my boys to the grocery store, I have to budget a half hour of time just to get them in and out of their state required car seats.
I do love my job. I love that I will remember every moment of my boys' lives. I guess I just long for a simpler time, when it was good enough for a woman to "just" be a wife and mother. I wish that a successful day for me would be to have the dishes done, the living room vacuumed, and dinner on the table, all while looking fabulous. So, I suppose my animosity toward Mrs. Cleaver stems from the fact that I envy her. I may have once been a feminist, but now I guess, I am just a mom, who wants to be June Cleaver... except for the heels. I hate high heels.
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