A Mommy Blog About Raising Men, Not Boys.

Sunday, December 27, 2009

The Trip for Charlie Part 2- The Part Where I Do NOT Get LocoPops

Ok so I was completely prepared to force my family in 30 degree weather to GO to Locopops while we were in Raleigh/Durham but wouldn't know you it - they closed down due to the damned blizzard that was allegedly on it's way.

Well we had time to kill so we went to a nearby mall and feasted on gelato and cookies.

The twins were pretty good despite being bored as we killed time milling around.

We ended up going to the chinese buffet next door to our hotel, as nothing else was open when the city became coated with ice. The big boy tried his first sushi!

I thought that this was extremely brave of him! It was completely his idea.

As we headed home in the ice and snow, we stopped at a rest area and needless to say, there was a lot of excitement about the snow. We don't get much in these parts and got none in Florida - so some fun with snowballs was in order.

And then because we are foodies of the highest order, we made a huge detour on the way to make sure we got to eat at Le Peep which our favorite brunch spot in the world. There is one on the FAR side of Charlotte.

We'll know in a few weeks I guess if we qualify for the study. We are crossing our fingers.

There are other games besides video

Saturday, December 26, 2009

The Christmas Traditions

Everyone has theirs, the things that mark the holidays as official within their own chosen family unit. As we were discussing ours, the oldest boy and I, he smiled and said "Wow - we do have our own Christmas traiditions. Just like a regular family.

Lord. What does he mean by that?I told him that of course we do, we ARE a regular family but I gotta wonder what he means? We're abnormal? Does he mean because of the twins or because we're not a cookie cutter of tradition?

I think we're pretty ok on most days.

Some of the traditions we observed and he pointed out to me on Christmas Eve ......first a few days before Christmas a big box from Crate and Barrel arrives courtesy of Uncle Fred.......full of hot chocolate and chocolate covered marshmallows.

Which is obviously just what we need to kick off proper holiday celebrations!

We make the requisite cookies from SCRATCH for Santa. No roll cookies here people!

And we make the requisite Gingerbread House centerpiece! (Note- the mini village was a disaster this year. It is not possible to work with tiny pieces of ginger bread and candies so small you can't actually place them. /FAIL!)

It turned out sort of OK but totally not up to my expectations. So I'll pass on anything miniature next year. I'm going to try something new at Valentine's so hang on. Maybe it'll turn out better.

What is the most fun to me though, out of everything, is watching this room get demolished in a sea of wrapping paper and dreams come true.

Is there anything better?

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

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.


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?

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".


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.

Thursday, December 10, 2009

Silent but Deadly 101

The oldest boy came in to the kitchen last night and proclaimed "Mom! I learned how to keep my farts silent!"
There was a part of me that really just wanted to say "Oh that's nice" and move along but still - I was curious if the boy had truly discovered the Grail of Fart Etiquette.
After all - he's a boy - they embrace their farts whereas we females tend to not be so loving toward them.
He explained the process to me but I'm not convinced it's a secret so much as the boy got lucky and didn't crank off a flapper. He alleges that he just THINKS about it and that it's all about control.
I'm going to make him some chilli and see if his method still foolproof.

Wednesday, December 09, 2009

Something's Going To Happen. Something Wonderful.

You don't always know when the last conversation you have with someone will be. Hell, it's likely you don't even remember when the first conversation was.
But Dec 8 transformed for me yesterday, from being the day that John Lennon died - to the day I had my first conversation.
With a five year old boy, who is autistic.

In my bleary eyed o'dark hundred rush to get the non-sick twin out the door to school, I was parked on the coffee table slippin on shoes and socks and singing along to Sesame Street when a little voice, as clear as a bell asked,"Where Charlie?"

I froze.

He reached out his foot to remind me what I was at, and I continue as I answered him."Charlie is sick. No school today for Charlie. He had to stay home."

He sat there for a moment and then said,"School Today. Go to school today."

I realized he was watching me very pointedly so I said,"No, Charlie has to stay home.No school today. Will you tell Miss Jenna Charlie is sick?"

He smiled and said "Charlie sick."

I'd stop there and be amazed and all teary eyed at this breakthrough - except it doesn't stop there. I emailed his teacher when I got to work, because I was SO excited about this and she emailed me back later.

While they were naming who was at school that day, she asked Miles "Where is Charlie?"
And at first he stared at her confused, but then piped up and said "No school today. School tomorrow."

He gets it. Suddenly, something inside him is getting it.

December 8. The first day I ever had a conversation with my son.

I can't wait to find out what else he has to say.

Sunday, December 06, 2009

Simply Having a Wonderful Christmastime


I'm so stoked. We kicked off our holiday season with our annual trek to the twins club Christmas party where there crafts and cookies to decorate!

Plus we saw the most handsome Mr and Mrs Klaus I've seen in a long time! I can't wait to see the pics!

After the party we went to a small town near us for their holiday celebration.

And there were marshmallows for toasting and carolling out in the snow..........ok we didn't get snow but we were supposed to! It was cold as shite though!

Pro Tip - when giving away free smore making stuff. Please don't leave the chocolate out in the freezing cold for hours prior. It makes the delicious melted burned up marshmallow and graham crackers hard to eat when the chocolate is LIKE ICE.

I'm just saying.

Who doesn't want this?

all the kids want one!

Friday, December 04, 2009


*Scenes from my bedroom this AM*
I open my eyes. Blink. It's really light in here. Why is it so bright. What time is it? 8am. Why is that wrong? 8am. Think- what time does the bus come?
Oh yes - odark hundred that is what time.

I stumble out of bed and walk to the computer to verify the time. First of all my alarm clock is like off. Second of all. We're late.

In what might be one of the greatest feats of calm of my life, I simply get all three kids up, dress them at the same time and take them downstairs for breakfast.

Then we all pile into the car and first we take the twins and drop them off and since they normally eat breakfast at school they have made it in time for morning work. Then I take the big boy and he isn't late at all.

I remember I need my glucose for my glucose tolerance test, remember I need to reset the alarm for the husband-first correcting the time-grab the glucose and my lunch which I had forgotten and I'm out the door.

Halfway to work I start to feel nauseous and sick, I didn't eat so my stomach is now screaming for food. I rushed so much I forgot the first rule of parenting - attach your own oxygen mask before assisting others with theirs. So, I swing into mcdonalds for a sausage mcmuffin - no coke, can't have sugar beverages today.

I zoom to work, sit down eat..............and realize I'm eating GREASE.

And I'm sure you'll be delighted to know I've been to the restroom 4 times.

Happy Friday!

***post script. I believe that all of this happened because my husband cursed me. Last night he said "Why don't you just set your alarm clock for the time you WANT to get up vs it being a fake time and resetting it after 20 minutes etc" (I had this whole routine). I staunchly defended my routine stating that I knew for a fact how WELL it worked and it was fine.
Perhaps that was some punishment from the fates for too much hubris and not a curse after all, eh?

Thursday, December 03, 2009

Your Favorite Christmas Memory? You Go First....

I got that text today from my friend Emma who was killing time at a job that is killing her spirit.

I started to take a moment to text her back and then realized that it was too long to text plus - it wasn't a memory.

It's a story, in fact.

When I was very little my grandfather took me to get a Christmas tree.

We returned with our tree and everyone was horrified. It was a tiny short tree. His reason? He chose one that I could touch the top of.

That was my grandfather's last Christmas. And I have no memory of this event. It breaks my heart, but like all things in kid world - if it isn't IMPORTANT or if no one shakes you and says GRANDPA IS SICK REMEMBER EVERY SECOND OF THIS your little brain doesn't absorb the memories.

I remember the time he took me to work with him, when he was the county building inspector, and that we went to Just Rite for lunch and I had a chocolate shake with burger and fries. I remember the way his pipe smelled, and that he'd smoke cigarettes outside once in a while but not really that often in the house. I remember the smoked Dutch Masters because I'd use the boxes to hold crayons. I remember everything, sometimes it seems. But I do not remember that tree.

There are no pictures because it was the 70s and we didn't take pictures of every damn thing the way we do now. I wish we had. I would love to see such a short fat little tree.

You never know what holiday will be your last with someone who means everything to you. I suppose that IS why I take hundreds of pictures of everything carving them all into my mind - and recording them so that even when I am the one no longer here, someone can see them and know what they are.

My favorite Christmas memory is the one I've lost. I'm sorry Grandpa.

Wednesday, December 02, 2009

Gall Bladder - I Thought You Wuz All Bettah

Oh hell I've been poisoned. Those of you who follow along remember my joyous months earlier this year where I was rushed to the hospital in excruciating pain only to discover I had a gall stone. Right?

Well right after that, I learned that "Gee you might nevre be able to properly digest fat again."

Not to put too polite a spin on it - if you eat fat - it MIGHT, MIGHT come flying out your ass in a manner so disgusting that it makes you doubt that you even have insides left. It might do so in a manner of minutes after you eat it. About 30 to 45 to be exact.

I dealt with this for several weeks post surgery. This horrible rushing to the restroom, the pain, the embarrassment and frankly the overwhelming discomfort of it all.

But I thought it had gotten better. Until I ate Captain D's tonight. Oh hell. Oh freaking hell. I might die. I can't even write this post because I have to keep rushing to the bathroom in a MOST undignified manner.

I realize that Captain D's IS a grease factory but JESUS I thought that I had eaten plenty of greasy nasty food and that my liver had learned how to be my gall bladder. That was what was SUPPOSED to happen.

Tonight my liver said "NOT SO MUCH" and failed me completely.

Now if you will pardon me, I'll be in the restroom.

Monday, November 30, 2009

Yes Virginia, There is A Santa Claus

I got our amnio results early this morning and if you have somehow NOT heard.......

the baby is fine.

And she is indeed Julia and not Hambone - which is what the husband decided we would name a boy. (Dear Lord).

I don't really know what to say. The relief is so complete, so overwhelming.

I called my OB and asked if there is even any reason for me to RETURN to the perinatologist. Apparently no one ever asked that before, because the nurse didn't know what to say and they are going to call me to tomorrow to let me know what HE says.

Life is good. It really really is.

Sunday, November 29, 2009

I Don't Want A Lot For Christmas

There is just one thing I need

I don't care about the presents

Underneath the Christmas tree.

I just want you for my own

More than you could even know

Make my wish come true......

All I want for Chrismas........

Is You.

Amnio Results tomorrow. We'll let you know.

Saturday, November 28, 2009

They're Called GeoTRAX

Not GeoHAIR.

Making the Feast

Our day started off with some petty theft, but not of the worst kind.
Just a little boy who simply COULD NOT WAIT I suppose.
After brunch though, it was time to get cookin'!

To launch the process the boy did his "shaking of the spices" dance.

Then we assembled the items to go inside the bird! Oranges and sage are delish!
And then they start working the bird!
It's such a weird holiday at our house. We don't have people over, it's just us hanging out doing our thing, but still - even with just US it's a wonderful family day. We just do our thing and I enjoy the day so much. I'm not sure it would be so special with a crowd.

Home-made whipped cream anyone?
And as you can see, the boy has made us all placemats and is wearing a lovely salute to Native American which he made at school.
Native Americans were well known for their macaroni necklaces I think.

I hope your feast was happy and joyous. I know ours was.

Thursday, November 26, 2009

Making the Pie of Our Homeland

I've always been envious of people with deep seeded ethnicity who would pull out their centuries old recipe for this or that at holidays. You know, that recipe for lutkefisk that Tante Anna hid in her shoe on her way to the new world. Or that special cake with super secret ingredients that can't be discerned and no one in your family will divulge because it's been in your family for 200 years?
Being Hoosier........we're rather......well.
Plain. We don't like a lot of wild or fancy things and we're all mostly German Irish but somehow washed most of that out of ourselves except during Oktoberfest when of course we're all German even the Irish.
So you can imagine my joy when I realized that we did indeed have something PURELY HOOSIER that I could make for Thanksgiving. My favorite pie in the world, that I have sought in every grocery store at every holiday since we moved away from Indiana in 1999.

It's roots are Amish and/or Shaker (we've had both in the Hoosier state) and folks.....it is now the STATE PIE. HAHAHA. Cuz you NEED A STATE PIE.

So, the husband picked up the ingredients and I lassoed the boy into assistance - he might've been born in Kentucky but his DNA is 100% Hoosier.

It's ridiculously simple to make, and now after reading about it I realize it's the pie you make when you only have a few things around on the farm and WANT a pie.

Waddya know, we've GOT A TRADITION!

We choose the first recipe from a list we found - from someone whose Grandmother's recipe it was, as it said her grandmother was Quaker and that rhymes with Shaker so I figure we'd go for it. If it's not exactly the way we want it, we'll go to the next one on the list.

The bits that bubbled over while it baked tasted delicious by the way.

While it baked, the big boy did another one of our traditions that is a new one - started by his teacher last year, he made place mats for the Holiday. He actually had one at school to bring home but he had to leave school early because of my amnio appt and didn't get to bring it home. But he's such a cheery boy, he didn't care and excited made new ones.

We're ready for Thanksgiving with our Hoosier Pie and our home made place mats! Now- BRING ON THE TURKEY!

Wednesday, November 25, 2009

Happy Thanksgiving!

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Tuesday, November 24, 2009

Everyone Who Told Me Amnio Didn't Hurt - FIRST AGAINST THE WALL!

Well we spent the better part of our day at the high risk OB enjoying all the lovely things they offer.

Ok ok ok. lots of people want to know what all went on and what all happened so lemme recap.

First we met with the genetic counselor, who was actually quite nice and very not-scary and she took our family histories for bad DNA, explained the amnio again and then offered us the opportunity to participate in two different studies. One will use our chromosomes to help determine if they can link specific chromosome abnormality to diseases (outside of the big ones they already know about). They're talking about super super small defects or irregularities that have to be seen with the microscope. Of course, I'd be a dick if I said NO to that - it could provide SERIOUS help to people in the future.
The second study is one where they are trying to be able to detect Down's Syndrome via blood draw AS ACCURATELY as they do with amnio. I had to donate extra blood and extra fluid to BOTH of these studies. But again....especially after HAVING the amnio - I'd do anything to help someone NOT have to go through that.

The blood draws sucked as blood draws do. I'm no hero. I'm not tough. People will say "But you've had three kids!" and I'll respond that YEAH, and I'm a total fucking whiny baby throughout the entire childbirth process too. You don't want any part of me during labor until I'm properly drugged up because I am NOT a trooper. WHY? Because there are no REWARDS for being a trooper. So I'm going to be exactly as big of a baby as I feel like being.

But the amnio-ack. Ok I admit I went in terrified and then they TOOK so FUCKING LONG to get to it (we were there like 4 hours) that my husband had to LEAVE because our kids would be getting off the bus. So then I'm on my own. The doctor that we don't like much (not the one from the phone call) was actually really sweet and realized I was scared and did her best to be super kind and supportive.

Here is what it is like. When the needle goes into your skin, it's like a blood draw, kind of like damn that sucks. When the needle goes into your uterus.....it feels like a hot metal rod. I can't explain it any other way. It feels huge. It's not a damn pinch like they said. It's unimaginable and it feels exactly like what it is. A piece of metal inside you.

I might have done better, and be less whiny but the baby kept moving, stretching up into the empty pocket where the needle was.

And she kept having to withdraw "slightly". Just enough to repeat the most painful part of the procedure over and over and over.

But suddenly I felt a much sharper and WORSE version of the same pain and then she says "OK we're done."

I had been gripped the sides of the table so hard, and clenching so hard, I could barely stand up. They tell me THEN that I can't go to work tomorrow (WTF?) and that I'm supposed to take it easy and lay around like a slug for 24 hours.

I came home and had peanut butter, cheese, crackers, chocolate covered cherry and a glass of wine and slept. I am not sure if I am physically hurt or just emotionally scarred.

I could have results as early as tomorrow for the "fast screen" or it could be Monday due to the holiday.

So there you go. You are all caught up.

Sunday, November 22, 2009

Ring Ring:BSA - It's the Clue Phone,It's For YOU!

So last year, when the big boy was in kindergarten, he was mistakenly given a flyer about being a cub scout. He came home ecstatic and that afternoon he and his father went to the school to sign up. He came home crushed, absolutely crushed, because he wasn't OLD enough.

A year passed.

We enter 1st grade and AGAIN we get the flyer about being a cub scout. We ALL go to the sign up meeting and sure enough, there is a legion of grown ups in their boy scout regalia taking our money and giving us forms to fill out and and giving us flyers about ALL THE EVENTS THAT WE ARE GOING TO HAVE and guess what the whole family is expected to attend.

I'm not even getting into how bizarre that is compared to the Girl Scouts.

But my problem is this, they took our money, we shelled out money for a UNIFORM and by the time it was said and done, they didn't have a troop leader - den leader - whatever. Nor did they have a PLAN. But they did have $200 of our money.

You would think, that an organization as old as the Boy Scouts would have a PLAN - after all, their bumper stickers proudly proclaim - 100 years of Scouting. Isn't their motto BE PREPARED? Well lemme tell you, they aren't.
We had a pack meeting (that's where all the dens get together once a month). No word about a den meeting. We had another pack meeting. No talk about a den meeting. When we finally start getting communication - they suggest WE do it.

Are you shitting me?

Don't get me wrong. I was in scouting for years. And if we didn't have TWO - count'em TWO special needs children and a baby on the way - I'd entertain it. I don't have any problem pulling our weight and participating. But it just isn't feasible or reasonable.

I said something to one of my coworkers who is one of the grand poobahs locally and some other leader held a den meeting. ONE DEN MEETING. We joined in August. At that den meeting it was again suggested that we be the leaders. Or my husband do it. Oh - and during sign up - there were so many kids joining that it would've been TWO dens. At the only den meeting held, there were TWO KIDS. My kid, and another.

Basically - they lost two dens worth of cub scouts because of their failure to adhere to their own motto - BE PREPARED.

At our last pack meeting, the big boy got a badge. Why? What did he earn a badge for since we haven't DONE anything? I don't know. YOU TELL ME! I'd feel worse, but the parents BEHIND ME also didn't know why their kids were getting them,and they were older than my kid AND IN ACTIVE DENS.

So this weekend, we took a boat that the big boy had painted - one he had been given at his ONLY DEN MEETING (I'm peeved about that can you tell?) and attended the pack's raingutter regatta.

He was the only "Tiger Cub" present. I am sure that this is because the other boy has ALSO dropped out now.

He lost both of his races, but won 1st prize for best design. Oh what was the prize? Oh there wasn't one. Apparently it didn't occur to anyone that there should BE prizes.

So I am now going to help you out, Boy Scouts of America. I am going to help you with some words of wisdom from someone WITH a clue.
  1. Everyone has to know what is going on. This means you have to speak loudly, and clearly and concisely. I know you're very worried about some prayer you wrote - but Jesus wants you to SHARE information, not just mumble prayers that no one can hear.
  2. Have a plan. I cannot stand to watch 5 adults in the front of a room and none of you know what you are doing, reading from papers you haven't looked at before THAT moment in time. Seriously, it's cool if just ONE of you does it all - as long as that one is prepared. Jesus wants it that way also. He likes it when you don't look stupid.
  3. Initiate and instill camaraderie. See - the biggest thing that children, especially young children, learn in scouting is camaraderie. It's the forging of friendships that isn't built around television and video games. You would think, if nothing else, that experienced leaders would be prepared to pick up one extra den meeting a month VS. sacrificing two entire dens. Some of you people live and breathe this stuff-I know you do, I can tell by how well pressed your uniform is. You are failing. Spend less time ironing, more time figuring out how to include EVERYONE.

My little boy has been told by the BSA that he is unimportant to them. He is only 7 so he doesn't perceive this. But I do. It's even been suggested that we just "go through his handbook with him". Wow, cuz that's fun.

I loved Scouting. But this is nothing like Scouting. Maybe I should put him in the Girl Scouts.......

Saturday, November 21, 2009

Stretching His Wings

My oldest child is not at home. He is spending the night at a friend's house tonight.

It is the first time he has done such a thing.

He's not here telling me about various inconsistencies in the Star Wars the Clone Wars vehicles episode to episode. He's not telling me a joke he made up which is not a joke.

He's not here.

I don't like it.

I won't lie and say I've never been without him - I have. I've travelled for work and stuff and been away from him. But he was HERE. He was home. If I am here, he's supposed to be HERE.

Now he's at the home of one of his very good friends, with a wonderful family and I hear there is pizza and ice cream sandwiches going on tonight and I KNOW that this is going to be a night he talks about forever. He is doing what I did so many times, over and over and over.

He's having a sleepover.

He's never had sleepovers at grandparents or relatives, no one ever lived close to us. He's never had friends to have sleepovers with until now - so I never had to cross this bridge.

I didn't know I wasn't ready when I said yes. I didn't know I wasn't ready when I rolled up his sleeping bag or packed his backpack and picked out jammies. I didn't know I wasn't ready.....until we drove away.

I don't like it because it's the first of 1000 steps that will take him away from me into his own life. And I don't begrudge him or want him to have anything BUT his own fulfilling independent life.

But he's 7. And frankly, I just wasn't ready.

Thursday, November 19, 2009

Hi This is Dr Jones, I've Got Some Really Bad News

This, in my opinion is not the way to start any conversation with a pregnant woman that doesn't end with "And your baby is dead."

I went last Friday for my next round of sequential screening - and they RAVED about the baby on ultrasound. She looks great, everything looks great, and I quote "WE HAVE NO CONCERNS".

Then I get the call from Mr. Bedside Manner. Oh excuse me, DOCTOR Bedside Manner.

I hold my breathe while he talks. "Well all of your risk factors have shot way up, we're especially concerned about your trisomy 18 risk factor which has shot to 1:85. We are going to need you to come in next week for more ultrasound and additional screening tests."

And I sob.

Trisomy 18, if you don't want to click on the link, means death for your baby. It's an extra chromosome on pair #18 and it includes horrendous birth defects and odds so bad - I'm amazed everyone doesn't terminate on the spot. It is a cruelty that I didn't even know existed and now they're telling me Julia could have it.

Oh and don't forget DOWNS. Like, Downs figures aren't as good as they were either - but hell, I'm barely even PHASED by that in the face of the other.

So I got off the phone and I sobbed and sobbed and I called my husband hysterical and I sobbed some more and I just sat there.....I felt adrift. Like I'd been cast out of the lifeboat and no one else was in sight.

And then I got mad.

If this was so fucking dangerous WHY didn't Dr Bedside Manner suggest amniocentesis immediately? I called their office back, still hysterical, and DEMANDED an amnio. I wanted it YESTERDAY. They put me through to a genetic counselor who I was probably not that nice to but I was fairly busy sobbing and screeching and telling her I HAVE TO KNOW I WANT AN AMNIO RIGHT NOW.

So they made it happen, for Monday.

And I was still hysterical. I couldn't think all day yesterday, I was in a blind panic and felt like everything was just over. Done. I didn't sleep right, I had nightmares all night and I frankly faced today fairly numbly.

So today I called my regular OB and told them I was cancelling my appt for next week, and that I'd reschedule after I got the results of my amnio. I just couldn't take going to that office, seeing all those big bellies and smiling faces........and knowing that my baby might never breathe. Of course, in the course of that conversation I again began sobbing and hitching in what I can best describe as an undignified pregnant woman with raging hormones trying to sound rational and in control.

It SO did not work. They immediately put me through to my nurse, who told me my OB was in surgery but he'll call me tomorrow. And to calm down. Duh.

So then, I called my high risk OB (yeah I have TWO, don't be jealous.). I explained that I wanted answers, I wanted to understand my scores and if they were integrated scores or individual scores and also - I wanted to know WHY they changed so much.

Dr. Supersweet and Understanding called me back.

The firs thing he said was, "You do realize that your odds, despite having worsened, are still better than double those for your age group?" Which - I swear to you the other doctor told me the OPPOSITE. I began to calm down. Then he walked me through why he's not immediately concerned about Trisomy 18.......he said it's fairly pronounced, and while he can't PROMISE, he sees nothing on ANY of my ultrasounds that indicates she has any of those birth defects - which are physical and just tragic. He said, reiterating what I have already heard, that on ultrasound, she's looking very good.

He also said that he understood that I wanted an amnio, that not knowing is very taxing and hard when you have all these hormones raging - and an amnio can provide reassurance that nothing is wrong or define what IS wrong, if something is.

I got off the phone feeling better.....able to breathe. I made an appointment with a genetic counselor because he asked me to and said he felt it was important so FINE. Then after that we'll do amnio and results will come back within 2 weeks, I guess depends on how long it takes them to match up and count chromosomes. If I remember properly from high school it takes a while to figure out which are exact matches. :)

Yesterday, I thought the world had ended for Julia and that I was going to have to decide to carry her to term just to watch her die, or make the ultimate decision and grieve sooner rather than later.

Today I feel better. I'm still fairly emotionally raw. But I'm better. And my husband made me laugh hysterically several times this evening.....so I think that is a good sign.

I leave you with, something to make you smile.

Tuesday, November 17, 2009

But I Don't See Them That Way

I'm probably too sensitive about the twins. Would it stun you to know that when I am with them, large stretches of time will pass where I forget that they aren't "typical"? To me, a lot of the time, they're just babies.
Great big, five year old babies.
We were at the grocery, pushing our two five year old babies around in carts, buying soda pop, and the 7 year old was babbling on about Star Wars and I saw a woman looking at the twins with a doting smile. She catches my eye and says "Oh how old are they?" I answer that they are five.
And then she says "Are they on the Spectrum?"
This is when my heart wrenches out of my body.

Yes, I tell her. They are both autistic. She tells me they are so cute, and we talk about their degree of disability. I learn she also has a son on the spectrum AND she teaches autistic children at a nearby school. She meant no harm or disrespect. She was very kind.

But I hate it that people notice.

I hate it for THEM and for me. I don't want you to see their disability. I want you to see that they hug and kiss and know all their abc's and numbers and that they CAN INDEED talk....they just don't quite understand it. I want you to see them greet me with total enthusiam when I walk in the door and the way they snuggle into my arms if they are sleepy during family time at the end of the night.

I want you to hear them laugh hysterically at Grover and at the Teletubbies.
THEY ARE JUST CHILDREN. They are not their disability.

At a recent meeting of our local support group - a parent described finding out their child was autistic as "losing" that child. At first I felt I understood - but in fact, all we lose is our IDEA of what they will be. When in fact, we never knew to start with what would become of them.

Our children are not who we think they are and will not be who we think they will be whether typical or not. And even though my beautiful twins were diagnosed with Autism this year....I didn't lose them. All this means is that their possibilities shifted - but not dissolved.

I don't see them as disabled. I just see them as who they are. I have to wait to find out who they will be.

Saturday, November 14, 2009

The Redemption of November 13th

Last November 13th, I thought I was going to give my mother the BEST birthday present (it's her birthday).
I was going to call her, after my trip to the OBGYN, to tell her I was pregnant.
I had an appt for a 8 week ultrasound and despite the massive amount of hormones I was on due to some earlier bleeding - I was looking forward to giving her a call.

Until I had my appointment.

That was when they told me it wasn't a baby, hadn't ever been one - and that it was time to let it go on it's way. Except that it just led to almost two weeks of one of the worst physical nightmares I've ever had.

Instead of calling my mom to tell her happy news, I called her and cried. And she cried too and it was a fairly miserable present to give her.

So this year, I was scheduled for a visit to the high risk OB - on November 13.

I got a little paranoid right before it - as you might've noticed from an earlier post. I just kept thinking,"This is too normal. This is TOO ok. Something is wrong."

When they started the ultrsound.....I held my breath.

Until she moved.

She is beautiful. And by the little glimpse she gave us of the goodies - she is in fact a she. We'll super double check that in 30 days or so. If she is, in fact, a she - she will be Julia Suzanne. Named after the Beatles Song Julia - and my mother's best friend Susan who is far more family to me than most of the people I'm related to.

Not familiar with the song? Well you should be. I'm going to be singing it a lot from now on.

Thursday, November 12, 2009

Am I Still Pregnant?

I think it's the transition from being irretrievably sick, cramping, in danger of miscarriage to totally smooth sailing that's got me flummoxed.

I keep forgetting I'm pregnant.

Now, don't get me wrong. My already gigantic G size cup boobs are even bigger and my round ligaments are stretching and hurting.....I've got the pregnant aches and pains.

I can feel the baby moving when it suits her (still saying HER)......but like.......

I guess all that constant vomitting was validating the pregnancy to me somehow. And now it's stopped.

I put a rational mind to it earlier, and realized that the last two pair of slacks I can WEAR used to be so BIG on me my husband would say they looked like CLOWN pants, and now they fit. And suddenly - I swear JUST tonight - my jeans are too tight.

I know part of it is anxiety because of the past two miscarriages and I can digest that ok. I can look at it objectively and say "You're looking for something to be wrong." But in fact.....if I'm sitting still like I am now.....

I don't feel pregnant.

Now of course, to make me a liar the little 16 week old human just flooped around but you get what I mean. If I took my bra off - I'd feel it. I'd be wishing I had a midget to walk in front of me to hold up my boobs. A strong midget, might I add.

But there are these weird moments, when I forget - until some ache or pain brings me back to it.

Maybe I felt this way before, but I sure don't remember it. Maybe I'm just worried or nervous because of all this ADVANCED MATERNAL AGE talk.

I go tomorrow for my next visit to the HIGH RISK OB where they are again going to rave about my ADVANCED MATERNAL AGE and then we are going to have one long drawn out ultrasound while they hunt for neural tube defects. Personally I am against these, and have decided we won't have any.

What I am looking for is the wiener. Or lack thereof, more specifically.

This, according to baby center is what my tiny human looks like.

My ass looks really good, don't you think?
I can wait to see her or him tomorrow. And yeah, I'll admit it. I'll feel a twinge of sad if it's a him. But it'll pass - and all I will be is excited about another beautiful boy in my life. All I want is healthy. Healthy will do.