...tomorrow I want to set up an appointment for us to tour Bennett Park Montessori, to get Eliot into the lottery system for the fall. School? Already?
I am not sure whether or not I'm using her condition as an excuse to be apprehensive about sending her off (everyone knows I'm a little nutty about sharing her), but it definitely has my mind going. It would be a whole new group of people, where I feel like we'd start from square one not knowing who we should tell, or to keep things more secretive, or just let it ride.
This is definitely where it comes in handy to have Dr. Mazur around...I'll be sure to pick his brain and get his thoughts.
It totally felt like the day would never come where I'd have to be thinking about school, and peers, but probably because I didn't realize that she could start school....actual school...when she is just three years old!
I feel bad that this blog is horribly updated, because when I started it, I thought I'd have tons to say and think about what she has going on, or that lots of new things would come up....but truth is, most of the time I don't even think about it. We are lucky that her health is seemingly otherwise perfect, because I've said before, most kids that have this going on have many other things going on as well. She does have tests for certain things that might arise, but as time goes on those tests are performed more infrequently.
We're also lucky in that, while she is not COMPLETELY over the top girly, she loves to wear dresses, and sparkly things, and tends to gravitate toward dolls and dress up. That's not to say, that once the dolls are dressed up, they don't become the victims of a ferocious dinosaur attack, or end up on a train ride....but at least they look good doing it.
I feel like she still seems pretty oblivious to gender, which I think is kinda awesome....but I also can't wait for her to be able to verbalize how she feels. Anyway, for a blog that gets updated twice a year, I apologize again for it being totally lame. But it's also pretty great that it's totally lame.
Oh yeah! She's totally potty trained! Second best day of my life!
Thursday, November 17, 2011
Monday, May 2, 2011
Eliot turns two tomorrow!
At 7:10pm tomorrow, it'll be two years since Eliot was born!
Two years ago, with Daddy and Gramma at our side, we were told "We're not sure whether your baby is a boy or a girl, and for now we'll refer to the baby as 'the baby', and you shouldn't name 'the baby' and you probably shouldn't talk to anyone about the birth of 'the baby'."
Three hours later, we met Dr. Tom Mazur, one of a handful of pediatric sexual psychologists, who happens to work and live within a mile of us. He's amazing, and talked us through those first few days, and helped to push to bring you home four days later. You were in the NICU those first four days, with actual sick babies, and that was really hard....with medical students walking by, taking notes on your rare condition. Dr. Mazur says you're the second he's seen there in 30 years, and the other is well into his 20's.
Your condition is called mixed gonadal dysgenesis, or mosaic Turner's syndrome, or 45xo46xy, and the best of my research has concluded that you are about one in a quarter million. I keep saying we should play the lottery :)
You've lucked out, healthwise, as most babies with your condition are prone to ear infections, hearing impairments, heart conditions, infant growth problems, thyroid issues, and swollen hands and feet, among other things.
You've also lucked out with being surrounded by the most accepting and supportive friends and family. Your "Aunt Nicole and Elisa" were the first ones to barge in and see you and ease our minds that everything will be fine! And they are. They're smart girls, and we're lucky to know them!
I'm sorry that the future might not always be such a smooth ride. I worry about the surgeries and growth and sex hormones that you're going to have to endure, and that you'll feel different than your peers.
But....that's not important right now!
Right now you love Toy Story, and the (stupid) Fresh Beat Band, and playing any musical instrument we can find you. You love the dogs, to snuggle (especially Louie and Ollie) and torment (especially Shelby). You love to play with your Jack and Sally dolls, and Woody and Jessie dolls, always making sure they hold hands. You love making any little character ride on horses, and apparently when horses walk, they say "Beeloop beeloop beelop". And for some reason, you really love helping me clean poop in the yard, pointing out the "doodoo". I just wish when I miss some, you wouldn't bring it to me as a surprise. It's hard to get mad when you're so proud of yourself, though.
You love bananas and eggs and chocolate milk. You love coloring with your chalk on the chalkboard. And the cabinets. And the walls, and floors, and dogs, and my face. I always have to check in the rear view mirror before I get out of the car, that I don't have a blue streak across my face. You'd rather be outside and naked than indoor and dressed. You love going for walks, but don't understand why you can't try to get into every parked car we pass.
You break the ice with other babies and kids by tickling them. You're a daredevil. But sometimes apprehensive. You're so independent, but cuddly and sometimes needy. You can be very patient like Daddy, or quick tempered like me. You're so smart and calculated, but not very wordy.
Milo is your best buddy, but you also love hugging and kissing his baby sister. You also love going upstairs to his apartment and stealing all their food, stuff you wouldn't eat if your life depended on it if I cooked it and served it down here. Not sure what you're trying to tell me.
You love to play with Dad, and no one is funnier (except Shelby when you hit her with your vacuum), but when you're hurt, you're a momma's girl, through and through.
Basically, I've said it before, you're the coolest little kid ever and the most crazy amazing thing that's ever happened to me.
Happy Birthday, little bean.
On a side note---who'd have thought I'd be able to cook and raise another human that would make it two years? Only 16 to go!
Two years ago, with Daddy and Gramma at our side, we were told "We're not sure whether your baby is a boy or a girl, and for now we'll refer to the baby as 'the baby', and you shouldn't name 'the baby' and you probably shouldn't talk to anyone about the birth of 'the baby'."
Three hours later, we met Dr. Tom Mazur, one of a handful of pediatric sexual psychologists, who happens to work and live within a mile of us. He's amazing, and talked us through those first few days, and helped to push to bring you home four days later. You were in the NICU those first four days, with actual sick babies, and that was really hard....with medical students walking by, taking notes on your rare condition. Dr. Mazur says you're the second he's seen there in 30 years, and the other is well into his 20's.
Your condition is called mixed gonadal dysgenesis, or mosaic Turner's syndrome, or 45xo46xy, and the best of my research has concluded that you are about one in a quarter million. I keep saying we should play the lottery :)
You've lucked out, healthwise, as most babies with your condition are prone to ear infections, hearing impairments, heart conditions, infant growth problems, thyroid issues, and swollen hands and feet, among other things.
You've also lucked out with being surrounded by the most accepting and supportive friends and family. Your "Aunt Nicole and Elisa" were the first ones to barge in and see you and ease our minds that everything will be fine! And they are. They're smart girls, and we're lucky to know them!
I'm sorry that the future might not always be such a smooth ride. I worry about the surgeries and growth and sex hormones that you're going to have to endure, and that you'll feel different than your peers.
But....that's not important right now!
Right now you love Toy Story, and the (stupid) Fresh Beat Band, and playing any musical instrument we can find you. You love the dogs, to snuggle (especially Louie and Ollie) and torment (especially Shelby). You love to play with your Jack and Sally dolls, and Woody and Jessie dolls, always making sure they hold hands. You love making any little character ride on horses, and apparently when horses walk, they say "Beeloop beeloop beelop". And for some reason, you really love helping me clean poop in the yard, pointing out the "doodoo". I just wish when I miss some, you wouldn't bring it to me as a surprise. It's hard to get mad when you're so proud of yourself, though.
You love bananas and eggs and chocolate milk. You love coloring with your chalk on the chalkboard. And the cabinets. And the walls, and floors, and dogs, and my face. I always have to check in the rear view mirror before I get out of the car, that I don't have a blue streak across my face. You'd rather be outside and naked than indoor and dressed. You love going for walks, but don't understand why you can't try to get into every parked car we pass.
You break the ice with other babies and kids by tickling them. You're a daredevil. But sometimes apprehensive. You're so independent, but cuddly and sometimes needy. You can be very patient like Daddy, or quick tempered like me. You're so smart and calculated, but not very wordy.
Milo is your best buddy, but you also love hugging and kissing his baby sister. You also love going upstairs to his apartment and stealing all their food, stuff you wouldn't eat if your life depended on it if I cooked it and served it down here. Not sure what you're trying to tell me.
You love to play with Dad, and no one is funnier (except Shelby when you hit her with your vacuum), but when you're hurt, you're a momma's girl, through and through.
Basically, I've said it before, you're the coolest little kid ever and the most crazy amazing thing that's ever happened to me.
Happy Birthday, little bean.
On a side note---who'd have thought I'd be able to cook and raise another human that would make it two years? Only 16 to go!
Thursday, November 11, 2010
Scientifically speaking, without speaking scientifically....
...anyone can google 'intersex' and read for days to learn anything they want to know. So I'll dumb it down for you.
It's a broad term that can incorporate many different conditions. XX usually equals female. XY usually equals male. Now realize that people can be XO, where the 'o' basically means that there is no male or female chromosome. Without that, we all start female, and only the presence of the Y turns little girl fetuses into little boy fetuses. On top of that, you can also have XO WITH xy, or xx, or xxy or xxx or any of those things on their own. Basically, your chromosomes can do whatever the frick they wanna, and for a number of reasons, or none at all. There are also conditions in which a straight up XX or XY either 'virilizes' (turns into a dude) or doesn't, with either outward or inward physical variations.
A large number of babies, children and adults have ongoing medical conditions, , growth problems, need hormone therapy, have thyroid issues, learning difficulties, and more! Hurray!
They estimate that 1.7% of ALL people have an intersex condition! Yep! Some people (maybe you!) never know it at all. Some people are diagnosed at birth. Some people find out when they fail to go through puberty. Some people find out when they are unable to conceive their own children. Some people....well...never know.
Maybe that's why if I didn't wax myself, I could PROBABLY grow a full on moustache in a week.
Alright...that's all I've got for now!
It's a broad term that can incorporate many different conditions. XX usually equals female. XY usually equals male. Now realize that people can be XO, where the 'o' basically means that there is no male or female chromosome. Without that, we all start female, and only the presence of the Y turns little girl fetuses into little boy fetuses. On top of that, you can also have XO WITH xy, or xx, or xxy or xxx or any of those things on their own. Basically, your chromosomes can do whatever the frick they wanna, and for a number of reasons, or none at all. There are also conditions in which a straight up XX or XY either 'virilizes' (turns into a dude) or doesn't, with either outward or inward physical variations.
A large number of babies, children and adults have ongoing medical conditions, , growth problems, need hormone therapy, have thyroid issues, learning difficulties, and more! Hurray!
They estimate that 1.7% of ALL people have an intersex condition! Yep! Some people (maybe you!) never know it at all. Some people are diagnosed at birth. Some people find out when they fail to go through puberty. Some people find out when they are unable to conceive their own children. Some people....well...never know.
Maybe that's why if I didn't wax myself, I could PROBABLY grow a full on moustache in a week.
Alright...that's all I've got for now!
Monday, November 8, 2010
To share or not to share....
Whenever I've thought about doing a blog like this in the past, I have two opinions arguing with themselves in my head.
The first is that I do not have the right to share this information. That even though she is my daughter, that I should have to be very secretive until she's at an age where it can all be explained to her, and then she can decide who knows and who doesn't. And that it is no one's business. This would come with a lot of dilemmas.
For instance, it would mean no babysitters. And while I certainly wouldn't put her in a more public daycare setting, that wasn't a very viable option. I need the sanity, reprieve, and...well...the ability to make money. She also needs the reprieve...sometimes by the end of the day together, even though she's still so young, we're fighting like teenage siblings! Plus, she's a very friendly kid, and that socialization is key. So...that required at least two people be told.
This would also mean that when we have company, that we'd have to be very discrete when it came to diaper changes, baths, swimming in her baby pool, etc.
I hope that she doesn't someday resent me for having made this decision on her behalf (well...yes, mine, too!)
Because my other argument is, and what has been proven in many cases, is that by keeping everything a secret will make her feel like she has something to be ashamed of. She doesn't. And shouldn't. And HOPEFULLY won't. If she wants to run around naked, in or outside....I am not gonna stop her!
A lot of our friends I've shared this link with already knew what's going on, like I said. But there are the ones that don't. I've gotten some pretty positive emails from some of you that definitely make me feel like this was the right thing to do, even though my heart raced nervously when I sent it knowing it would be new information to some. Thanks to each of you!
I don't want all this to be the focus of her life, certainly. But I'm pretty big on honesty, so it's even more important that it's not our (deep, dark, dirty) secret.
I also hope that at some point, this can show up in a search and be helpful to someone else, because I had to SCOUR the internet to find ONE family in our exact situation, with the same diagnosis.
Hell....maybe Oprah will find it and give us a free car or trip to Australia!
More important than whether I've made the right decisions so far, though, I hope she loves herself as much as everyone else does.
The first is that I do not have the right to share this information. That even though she is my daughter, that I should have to be very secretive until she's at an age where it can all be explained to her, and then she can decide who knows and who doesn't. And that it is no one's business. This would come with a lot of dilemmas.
For instance, it would mean no babysitters. And while I certainly wouldn't put her in a more public daycare setting, that wasn't a very viable option. I need the sanity, reprieve, and...well...the ability to make money. She also needs the reprieve...sometimes by the end of the day together, even though she's still so young, we're fighting like teenage siblings! Plus, she's a very friendly kid, and that socialization is key. So...that required at least two people be told.
This would also mean that when we have company, that we'd have to be very discrete when it came to diaper changes, baths, swimming in her baby pool, etc.
I hope that she doesn't someday resent me for having made this decision on her behalf (well...yes, mine, too!)
Because my other argument is, and what has been proven in many cases, is that by keeping everything a secret will make her feel like she has something to be ashamed of. She doesn't. And shouldn't. And HOPEFULLY won't. If she wants to run around naked, in or outside....I am not gonna stop her!
A lot of our friends I've shared this link with already knew what's going on, like I said. But there are the ones that don't. I've gotten some pretty positive emails from some of you that definitely make me feel like this was the right thing to do, even though my heart raced nervously when I sent it knowing it would be new information to some. Thanks to each of you!
I don't want all this to be the focus of her life, certainly. But I'm pretty big on honesty, so it's even more important that it's not our (deep, dark, dirty) secret.
I also hope that at some point, this can show up in a search and be helpful to someone else, because I had to SCOUR the internet to find ONE family in our exact situation, with the same diagnosis.
Hell....maybe Oprah will find it and give us a free car or trip to Australia!
More important than whether I've made the right decisions so far, though, I hope she loves herself as much as everyone else does.
Saturday, November 6, 2010
My little lady...
I am the mom of an intersex child.
And probably one in every thousand moms you see are as well.
My daughter's condition had her taken from me at birth, and put through four days of testing before they could even tell me whether I'd had a boy or girl.
And you know what they told me? That she was in fact, neither. Or both. That I, along with her father, would have to 'assign' her gender.
I will go into more details on all the medical facts as I hopefully get this blog rolling.
My reason for starting this is to hopefully create some debate, and to share this information non-anonymously with people that I am certain will love and accept her regardless, and anonymously with....well...the rest of the world.
We have a great deal of friends and family who are perfectly aware of everything about our lives, but it makes me sad that this 'condition' is attached with such stigma (whether religious, or fear based....or...something else?)
If my child was born with down syndrome, or diabetes, or any other lifelong condition, I would be able to share very openly all my thoughts and fears and hopes...but instead, she has gone through so much! And instead, I have to very cautiously share information either vaguely, with a select few, or not at all.
Not fair! When I had to have her go 'under the knife' at 6 weeks, to remove her 'ovaries', only a handful of people knew. When she had to have her heart repeatedly tested for abnormalities, again....I could only share my fear with my closest friends and family. (Thank goodness, her heart is perfect!) Knowing that she will need to endure painful surgeries at puberty, because regardless of whether we chose 'correctly', she will need these? That most likely she will be forced to take growth hormone shots daily within the next few years, and hormones for her entire adult life? And that at a certain point SHE will be put in the horrible position of knowing who she can trust with all of this?
Whenever I hear people debate over anything relating to gay rights, marriage, etc, I'm glad that the road is being paved to make her life easier, but I just want to scream at people who feel that being gay is somehow a choice, or that "God" would not accept people who are. I am not religious. And I know that not everyone who is thinks that being gay is wrong. But to those who do.....what about MY child? What if she decides that she likes women? Or what if she decides that she was meant to be a boy and decides she likes men?
She has both male and female chromosomes....so does "God" grant her a free pass to be gay? Or is she just an abomination to you, and her fate determined at the point of conception? I have to say, if it weren't for religion, I think her life would have a much better chance of going on unhindered.
Alright....time to get dressed and hang out with the coolest little person I know!
And probably one in every thousand moms you see are as well.
My daughter's condition had her taken from me at birth, and put through four days of testing before they could even tell me whether I'd had a boy or girl.
And you know what they told me? That she was in fact, neither. Or both. That I, along with her father, would have to 'assign' her gender.
I will go into more details on all the medical facts as I hopefully get this blog rolling.
My reason for starting this is to hopefully create some debate, and to share this information non-anonymously with people that I am certain will love and accept her regardless, and anonymously with....well...the rest of the world.
We have a great deal of friends and family who are perfectly aware of everything about our lives, but it makes me sad that this 'condition' is attached with such stigma (whether religious, or fear based....or...something else?)
If my child was born with down syndrome, or diabetes, or any other lifelong condition, I would be able to share very openly all my thoughts and fears and hopes...but instead, she has gone through so much! And instead, I have to very cautiously share information either vaguely, with a select few, or not at all.
Not fair! When I had to have her go 'under the knife' at 6 weeks, to remove her 'ovaries', only a handful of people knew. When she had to have her heart repeatedly tested for abnormalities, again....I could only share my fear with my closest friends and family. (Thank goodness, her heart is perfect!) Knowing that she will need to endure painful surgeries at puberty, because regardless of whether we chose 'correctly', she will need these? That most likely she will be forced to take growth hormone shots daily within the next few years, and hormones for her entire adult life? And that at a certain point SHE will be put in the horrible position of knowing who she can trust with all of this?
Whenever I hear people debate over anything relating to gay rights, marriage, etc, I'm glad that the road is being paved to make her life easier, but I just want to scream at people who feel that being gay is somehow a choice, or that "God" would not accept people who are. I am not religious. And I know that not everyone who is thinks that being gay is wrong. But to those who do.....what about MY child? What if she decides that she likes women? Or what if she decides that she was meant to be a boy and decides she likes men?
She has both male and female chromosomes....so does "God" grant her a free pass to be gay? Or is she just an abomination to you, and her fate determined at the point of conception? I have to say, if it weren't for religion, I think her life would have a much better chance of going on unhindered.
Alright....time to get dressed and hang out with the coolest little person I know!
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