A Mommy Blog About Raising Men, Not Boys.
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Tuesday, December 22, 2009

The Trip for Charlie



We got into the car, all of us, last Thursday and drove east - toward Chapel Hill.


We're trying to get one of two little boys into an experimental treatment program for autism, and this was the first step. The closest lab participating is at UNC - so off we went. Some very kind people helped us coordinate the process, even contacting the Ronald McDonald house because as patients in the program they would assist us with lodgings.
I'm not actually sure how much I am or am not supposed to SAY about the actual treatment so I'll just be vague, but I'm hoping he gets in and I'm hoping he does not get the placebo. My littlest boy has the greatest challenges and problems. He is far more severely autistic than his brother.

You can imagine our displeasure when as we headed into NC I got a message saying "You may have heard we're getting a severe snow storm........."WHAT? WHAT? NO!"

I did not hear. Sigh. I can't say enough with how gracious the research coordinator was even contacting the Ronald McDonald house to get us more time if we got trapped there. Amazing.

But they were able to see him and do the interview process. It was a very impressive campus and hospital system. Of course, that night.........the snow came.

.....part two tomorrow

The Trip for Charlie



We got into the car, all of us, last Thursday and drove east - toward Chapel Hill.


We're trying to get one of two little boys into an experimental treatment program for autism, and this was the first step. The closest lab participating is at UNC - so off we went. Some very kind people helped us coordinate the process, even contacting the Ronald McDonald house because as patients in the program they would assist us with lodgings.
I'm not actually sure how much I am or am not supposed to SAY about the actual treatment so I'll just be vague, but I'm hoping he gets in and I'm hoping he does not get the placebo. My littlest boy has the greatest challenges and problems. He is far more severely autistic than his brother.

You can imagine our displeasure when as we headed into NC I got a message saying "You may have heard we're getting a severe snow storm........."WHAT? WHAT? NO!"

I did not hear. Sigh. I can't say enough with how gracious the research coordinator was even contacting the Ronald McDonald house to get us more time if we got trapped there. Amazing.

But they were able to see him and do the interview process. It was a very impressive campus and hospital system. Of course, that night.........the snow came.

.....part two tomorrow

Tuesday, December 15, 2009

The Road to Gattica Is Paved With These






That, ladies and gentlemen, is a normal baby girl. I know this, because I signed up to do massive amounts of genetic testing on her - not just counting chromosomes which is your normal amniocentesis. Because of my "advanced maternal age" and because the twins are autistic - we qualified to do all sorts of fancy studies.




They're going to keep our chromosomes on file and study them and use them in various research studies where they are looking for patterns which detect disease. And not just eyeballing them - looking at them at incredible detail under the microscope for any sort of error.....they can see some cancers this way.




If they find them on us - they'll contact us. Nutty -eh?




This one is mine. Did you ever see your own chromosomes? It freaks me out a little - these are what I am made of. They're so bizarre - but I'm told that they are completely normal - I've had myriad phone calls saying that they've passed this and that and the other thing. 100% NORMAL - at least at the chromosome level.




This is the husband. See the Y chromosome? I don't even know how they think some of these match, it's so bizarre.

What freaks me out, based on some of the things we've learned, is that they can see autism (sometimes or all the time I'm not sure) as a microscopic chromosome error. They don't know how it's caused........but they can see it.

What then gives me pause is that if they can see it - then in the future they can make decisions to eliminate it. And you know what I mean.

I'm very pro choice - but based on the papers I signed which allow them to keep my chromosomes and DNA on file at Columbia......I just felt the way the wind was blowing. Genetic Selection will become a reality. I just participated in the process. I did it for selfish reasons - because I wanted to hear that my baby girl was ok. And it will be invaluable in detecting disease and other problems so you can be prepared at birth.

I'm not going to worry about a future I can't change, and I'm really glad for all the good it will do. I'm just sad that someone someday might make a choice that would deny them curly headed boys who give kisses and love the Teletubbies.

Because sometimes you don't know that you would want something until you are faced with it. And then you know you'd rather have that, than nothing at all.

The Road to Gattica Is Paved With These






That, ladies and gentlemen, is a normal baby girl. I know this, because I signed up to do massive amounts of genetic testing on her - not just counting chromosomes which is your normal amniocentesis. Because of my "advanced maternal age" and because the twins are autistic - we qualified to do all sorts of fancy studies.




They're going to keep our chromosomes on file and study them and use them in various research studies where they are looking for patterns which detect disease. And not just eyeballing them - looking at them at incredible detail under the microscope for any sort of error.....they can see some cancers this way.




If they find them on us - they'll contact us. Nutty -eh?




This one is mine. Did you ever see your own chromosomes? It freaks me out a little - these are what I am made of. They're so bizarre - but I'm told that they are completely normal - I've had myriad phone calls saying that they've passed this and that and the other thing. 100% NORMAL - at least at the chromosome level.




This is the husband. See the Y chromosome? I don't even know how they think some of these match, it's so bizarre.

What freaks me out, based on some of the things we've learned, is that they can see autism (sometimes or all the time I'm not sure) as a microscopic chromosome error. They don't know how it's caused........but they can see it.

What then gives me pause is that if they can see it - then in the future they can make decisions to eliminate it. And you know what I mean.

I'm very pro choice - but based on the papers I signed which allow them to keep my chromosomes and DNA on file at Columbia......I just felt the way the wind was blowing. Genetic Selection will become a reality. I just participated in the process. I did it for selfish reasons - because I wanted to hear that my baby girl was ok. And it will be invaluable in detecting disease and other problems so you can be prepared at birth.

I'm not going to worry about a future I can't change, and I'm really glad for all the good it will do. I'm just sad that someone someday might make a choice that would deny them curly headed boys who give kisses and love the Teletubbies.

Because sometimes you don't know that you would want something until you are faced with it. And then you know you'd rather have that, than nothing at all.

HOW COULD YOU???


How could you put up this beautiful tree and then forbid me to touch it you EVIL WOMAN!!

HOW COULD YOU???


How could you put up this beautiful tree and then forbid me to touch it you EVIL WOMAN!!

Monday, December 14, 2009

Christmas on the Mountain


Here we are on top of Atlanta, on a freezing cold winter day stading on the peak of Stone Mountain. My company christmas party was there and it was just a fantastic day. I love the place, it's full of wonderful but corny family fun and the kids think it's all amazing.






Hey Look! It's Atlanta!

We had a lovely Christmas dinner and we rode the freezing cold caroling train.







This is the Baby Birth of Cool and I trying not to freeze to death on the train. BRRRRRRR.

Ok so besides doing the laser show which we saw in the summer, there was this Snow Angel thing and the oldest boy really wanted to see her. I wasn't really interested, being evil at heart but I acquiesced and we took up positions to see her after we caught the Polar Express in 4D.

Ok so she might LOOK a little corny......






But from what I can tell, when she makes it snow - it's fairly magical. What do you think?

Christmas on the Mountain


Here we are on top of Atlanta, on a freezing cold winter day stading on the peak of Stone Mountain. My company christmas party was there and it was just a fantastic day. I love the place, it's full of wonderful but corny family fun and the kids think it's all amazing.






Hey Look! It's Atlanta!

We had a lovely Christmas dinner and we rode the freezing cold caroling train.







This is the Baby Birth of Cool and I trying not to freeze to death on the train. BRRRRRRR.

Ok so besides doing the laser show which we saw in the summer, there was this Snow Angel thing and the oldest boy really wanted to see her. I wasn't really interested, being evil at heart but I acquiesced and we took up positions to see her after we caught the Polar Express in 4D.

Ok so she might LOOK a little corny......






But from what I can tell, when she makes it snow - it's fairly magical. What do you think?

Sunday, December 13, 2009

Door Holding Etiquette for Patrons of the Chuck E. Cheese

Dear God I don't know how some people get out of their house and function properly. I swear to GOD I don't. How do you survive in your ridiculous little life - what with all of the enormity of injustice heaped upon you on a daily basis?
Well, luckily, Gidge is here to help you - to bring you some peace during these trying holiday times to alleviate some of your frustration and bad temperament.

Let's cover - HOLDING DOORS.

Holding doors open for folks is friendly, good manners and just polite. I'm not the best at it in the world, but I try. I always, ALWAYS say thank you when someone holds a door for me. I think it's something someone doesn't HAVE to do and I think it's lovely when they bother.

So yesterday - the boy and I are trudging into the Chuck E. Cheese for a birthday party for one of his friends. As we slog through the rain/sleet/ugliness two other families are almost at the door as well. I get there first - and hold the door.

Family 1 passes through.

Family 2 is slightly further back - but is VERY overloaded with STUFF so, to be polite- I stand and hold the door - even making small talk as they go through.

Then I start into the door myself. Out of the corner of my eye I see a woman and her child who I had never seen, who weren't all that close even- suddenly come RUNNING - so although I'm in the door already - I lean back and hold it open as she's suddenly closed the gap considerably. Which is why I can HEAR her as she's snarling,"Oh fine just slam the door on my face nice manners, nice christmas spirit. NICE SOUTHERN HOSPITALITY!"

Ummmmmmmm what? Woman, you weren't anywhere NEAR- possibly not even parked when I got to the door. I SAW you were nearing and halted - holding the door so that it in fact DID NOT slam your face. What the hell?

This woman glared at me as we went in, and the nice lady at Chuck E. Cheese asked "Are you all together?" at which point Mary Sunshine barks "We're not with HER".

WHAT?

I swear from now on I'm just not going inside, I'll just stand and wait to see if anyone, ANYONE in the parking lot would like to go inside.

Door Holding Etiquette for Patrons of the Chuck E. Cheese

Dear God I don't know how some people get out of their house and function properly. I swear to GOD I don't. How do you survive in your ridiculous little life - what with all of the enormity of injustice heaped upon you on a daily basis?
Well, luckily, Gidge is here to help you - to bring you some peace during these trying holiday times to alleviate some of your frustration and bad temperament.

Let's cover - HOLDING DOORS.

Holding doors open for folks is friendly, good manners and just polite. I'm not the best at it in the world, but I try. I always, ALWAYS say thank you when someone holds a door for me. I think it's something someone doesn't HAVE to do and I think it's lovely when they bother.

So yesterday - the boy and I are trudging into the Chuck E. Cheese for a birthday party for one of his friends. As we slog through the rain/sleet/ugliness two other families are almost at the door as well. I get there first - and hold the door.

Family 1 passes through.

Family 2 is slightly further back - but is VERY overloaded with STUFF so, to be polite- I stand and hold the door - even making small talk as they go through.

Then I start into the door myself. Out of the corner of my eye I see a woman and her child who I had never seen, who weren't all that close even- suddenly come RUNNING - so although I'm in the door already - I lean back and hold it open as she's suddenly closed the gap considerably. Which is why I can HEAR her as she's snarling,"Oh fine just slam the door on my face nice manners, nice christmas spirit. NICE SOUTHERN HOSPITALITY!"

Ummmmmmmm what? Woman, you weren't anywhere NEAR- possibly not even parked when I got to the door. I SAW you were nearing and halted - holding the door so that it in fact DID NOT slam your face. What the hell?

This woman glared at me as we went in, and the nice lady at Chuck E. Cheese asked "Are you all together?" at which point Mary Sunshine barks "We're not with HER".

WHAT?

I swear from now on I'm just not going inside, I'll just stand and wait to see if anyone, ANYONE in the parking lot would like to go inside.