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.

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.

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.

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.

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.

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.

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.

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.

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.

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.