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July 25, 2008

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My husband and I are now working on getting pregnant. I honestly told him before we married that if I had a child with "special needs" I didn't think I could do it. I am awe-struck by women who can and do, but I don't think I have it in me. Thank you for letting me know I'm not the only person with these fears and concerns. Don't let anyone else's heroism force you/shame you/guilt you into a situation you can't handle. Everyone is different and you know your own limits. Thank you for writing your amazing blog-- you are an inspiration!

This post is on Good Mom/Bad Mom today. Perfection.

My nephew has Down Syndrome. He's 5 now and the sweetest boy ever. I don't know if I've ever mentioned it on my blog b/c it's not really my story to tell. Just trust me when I say it is a happy story. A harder one, oh yes. A worrisome one? That too.

But what mother doesn't wish for the best possible life for her child? Don't beat yourself up for that. Whatever happens, she'll still be perfect to you. xoxo

Wow. Just wow.

After a couple days of reading your blog, you have become an inspiration to me. You and a few others that I've seen through their comments here. I moved to Colorado 2 years ago and have been very hungry for some friends. I have a 22 month old who could possibly be autistic - we're having her tested on Sept. 5th - and I can understand your worries. My pregnancy was perfectly normal and then... well, she just doesn't "act like other kids" in several ways.

Don't feel bad for what you're feeling - I'm thankful you're willing to share those feelings with the rest of us. Sometimes it's scary being a mom and I think, on occasion, all of us miss those times where we didn't have to be responsible for someone else. I wouldn't trade my Natasha for the world, but I also miss the lack of responsibility.

Note: I don't think anyone who becomes a hero really wants to be. They become heroes because, well, that's who they are. It's in their blood, their personality, their hearts. It's in that snap-second decision we make whenever confronted by adversity. It's in that long thought-out decision we make when we truly want to do something.

By sharing these intensely personal experiences with the world, I think you are one of my heroes. I want to write so badly that it's not even funny - I can taste it. Your words seem to spill gracefully out on the page where, when confronted with an empty page, I stutter and stammer even though 5 minutes ago I knew what I was going to say.

Take care and I'm definitely reading.

I hear you, loud and clear. This has been on my mind for two years, but moreso lately. I'm not so sure of the game of genetic roulette I'm getting myself into these days.

But my daughter is evidence that more than one marker can still mean a healthy child.

I don't think I'll stop being nervous until I'm holding another healthy child.

a friend's dr. tried to get her to have an abortion as she had german measles --- she wouldn't the baby was fine. Dr. aren't God. I wish you strength and courage. I've lost 2 baby girls premature and you know if they'd had something wrong-- lived I'd loved them anyway. It's been 16 almost since I lost the first one - it still hurts. We mothers do what we must.
Sending you lots of hugs!!!!!

I don't miss that--the joy and absolute stress that comes with being pregnant. I wish you and your family well and I commend you SO MUCH for being so honest.

K my second child had that marker show up and we went to 'genetic counselling' and talked about amnio's and all that. We said no..we would just wait and see..but it certainly took all the 'fun' out of pregnancy. We were anxious for the rest of it despite 'fine' US's too.

The worry was there...even if our resolve was strong....

She was "fine"

We said NO to ANY of 'those' tests with Scott.

He died at 26 weeks.

We don't know why really.

But now are faced with the FUN of a billion tests and worries if we try again.

You are allowed to feel angry/scared/sad/worried etc etc...no matter what OTHER MOMMIES are feeling or been through...our worries and fears are our own..

We all hang together by the skin of our teeth..not matter what.

In my second pregnancy a soft marker was identified by a particularly insenstive dolt of a maternal-fetal medicine specialists. In the end my son was fine. If he hadn't been we would have still loved him and coped with the resulting change in plans. However, regardless of how things turn out there is a bit of sadness that comes with the dr/midwife taking from you the illusion of a worry-free pregnancy.

Geez, do you have to make me cry EVERY TIME? You are so brave and everyone else has said the things that I wanted to say but they said it so much better.
Big love to you and you have SO MANY PEOPLE giving you the good mojo...it won't make you worry less but please know we care.

Sometimes the hand we are dealt sucks. It just does. But we pick ourselves up off the floor to give our cchildren the best life we can. We make mistakes. We feel sorry for ourselves sometimes. But in the end, its love that matters. Its all that matters...the love for your child.

We just found out that my daughter has Marfan Syndrome, just as my husband does. There is no cure. She is 4 yrs old and is already on heart medications. She will never be allowed to be a competitive athlete. I will always worry about her aorta and blood pressure and will never be able to go a day without worrying about her heart health. But I wouldnt change her for the world. She is my baby and is perfect for her. http://supermom04.blogspot.com/2008/07/diagonsis-confirmed.html

It sucks. But bottom line, its all about love. No matter what.

Kristen - I had a soft marker with my son (#2) and NO markers for ANYTHING with #1, and #1 had the birth defect.

She is MY hero. I'm not a hero. My daughter has been through 2 surgeries, a boat load of tests, and uncertainty - yet she wakes up every morning with a smile on her face.

You do the best you can for your kids - worry is part of the job description. Wondering if you have the strength to handle the cards being dealt is also part of the job description.

I'm here to tell you - you do.

I found your blog at mom101 and love both yours and Liz's blog. I just entered my 2nd trimester, having a high risk pregnancy. Thank you for writing and for preparing me for the unpredictable. The good the bad and the ugly!

We do. Period. And today, not knowing what is ahead you can't know,but you will. Whether it's a non-sleeper or something greater, you will see it through and you will love that child with a ferocity as intense and pure as with you other babies.

That said, the worrying is so normal! Good luck!

I'm not a mom yet but I think about this stuff, too, when I consider how it will be to grow a baby inside of me. It's women like you and the others who have made such eloquent comments who help me to feel assured that I can do it.

This is a great post. And from a mother who lost a baby, you are dead on. I remember looking at a little girl with downs after my baby had died, and I was jealous. I hope your baby is just fine. Perfect. Nobody should have to be a hero.

Kristen,

Both Janice and I went through soft marker nightmares with our first pregnancies.

Jackson had enlarged kidneys and with Julia I had the triple test tell me I had high risk of Downs.

We both freaked. And cried. And freaked more.

I know it won't help to tell you that we freaked in vain, because neither child had Downs.

I'm so sorry. The unknown is the worst.

But what I didn't know then was what an amazing community of bloggers there are to help us all through whatever happens.

Oh, sweetie. You are wonderful. I totally love you to death.

Let me tell you a secret (ok, it isn't a secret, because I have shared this and I would make it a private email but i am in buttfuckingnowhereIdaho in a car on a phone but you need to know this. wow. Long.)

When I was in the ER with my son my husband could only verify that he saw him breathing a half hour before. I thought, "That is a LONG time without oxygen. What if he made it but was horribly brain damaged. COULD I COPE WITH IT?"

It.scared.the.shit.out.of.me.

Would I have taken it? YES. Would it have been pretty, like Tanis said? NO.

Could I have coped? Probably.

I have BEATEN myself into a hole for almost 5 years for asking that question because I AM HIS MOM! I SHOULD NEVER HAVE THOUGHT THAT!!!

WRONG.

It is human. HUMAN. To be scared, to worry, to just be freaked the hell out at the possibility. Just like your fears.

I hope that in some small way you get this and that I haven't made an ass of myself. It is probably something I should have said in an email but I REALLY wanted to make sure I talked w/you and in the fallout of vacation, things get lost in the jumble.

HUGS a thousand times over.

It's natural to be afraid.

With my first pregnancy I was so naive....it never occurred to me to worry about complications. We had a beautiful baby boy.
Almost 14 years later,I suffered 2 miscarriages and 2 high risk pregnancies.

We have 3 wonderful children. They are my heroes. Through the good and bad they teach me something everyday.

Even though they are what drains you they are also what strengthens you.

I'll be thinking of you.

No one is guaranteed anything in life. I just remind myself of that.

Hugs, I have no wonderful words, just my thoughts and prayers for you. Big big hug.

Perhaps it would be better not to worry about such things unless you have to. Because if you do have to, you won't have a choice whether to worry or not and you may long for the days when you could have chosen optimism.

I wish I had some wonderful words of wisdom to ease your worries and your fears. I will be thinking of you. xoxo

Love what Stacey said. Each of us has our own pain and experience challenges in our own way- there can be no comparisons. Thinking of you and wishing you the best

We all do what we've got to do. Some do more than we ever planned or expected to, but we muddle through and count our blessings - even those of us who don't believe in blessings per se. ;)

Honey, I'm no more a hero than any other mother or father out there.

When I gave birth to Bug I raged against the world, God and myself. The last thing I wanted to do was mother a child who was different, disabled.

It scared the holy hell out of me.

But while his disabilities scared me, he didn't. You learn to see past the syndrome or disease or whatever and just see the child, loving you, needing you, trapped in a faulty body.

THAT is what gives all of us parents to children with disabilities the strength to parent these special kids for another day.

But don't kid yourself, there are days when we flat out can't do it and feel like the world is falling and we have failed and the burden is too heavy.

That's called being human. It's normal whether your kid has a normal i.q or not.

Everyday you choose to love your child and parent them makes you a hero. Because there are parents out there who won't or can't do that for the kids they've birthed.

I promise you. ABSOLUTELY guarantee, that no matter what happens, syndromes or not, it will be okay.

Maybe not pretty, but it will be okay.

And you will look at your child and wonder how you ever worried you couldn't do it.

It's all about the love. I swear.

You know how to reach me, love. I'm here for you.

When I was pregnant with my second, who is 3 months old now, we had an ultrasound that showed he had choroid plexus cysts (sign of Trisomy 13, these babies don't live past infancy) on his brain. We then had to go to the Maternal Fetal Medicine Specialist to have the level 2 ultrasound. We were told that the cysts had decreased in size but they had also found a calcification on the baby's heart, a soft sign for down's syndrome. We were very worried. I also didn't want to be a hero and wasn't sure I could be if called. I had the blood test completed and my results were great. Our worry decreased but was still there. In my third trimester, I had another level 2 ultrasound, which should that the choroid plexus cysts were gone and that the soft sign was no longer an issue. Today we have a healthy baby boy. Hang in there. I will be thinking of you and your family.

Very truthfully wrote. I think many of have these fears but often are afraid to say it.

I think most moms would feel exactly how you are feeling. I would (and have). I also worked with special needs children and used to pray, I mean PRAY, that God was not preparing me for a lifetime gig when I was pregnant. I would feel badly about it, too, but I think it is more human than you. Really.

Just wanted to ad, I appreciated that when you talked about being called up for parenting, you included those of us who were "matched" as well as pregnant. Just a little thing, but it made me feel good.

That soft marker thing put me threw a similar agony when I was pregnant with my son. I was a mess, worrying about Downs and worry about the kidney problem, which was the marker. I too don't want to - can't - be that hero.

But if called, you know we will be. Cause that is life as a mother.

Those other fabulous women you mentioned didn't want to be heroes either. They just wanted to be mothers.

(That was the dangerous job we crazy women signed up for. WHAT were we thinking?!?! - Oh yeah. It is still the most gratifying, delicious job on the planet.)

You will be a mom to your child and no matter what, you will be the best mom you can be, just as you're already doing. It's not a decision you have to make or something you need to work at. It's who you are already...a caring, generous, big-hearted woman who does so much for so many. Don't ever forget that.

It's natural to be worried about what happens if your child isn't what you expected him/her to be. The hardest part for me was breathing that sigh of relief when Cordy was born, counting those 10 fingers and 10 toes, and thinking that I had the most perfect child, only to be told three years later that she isn't as perfect as I had expected. I still love her just as much, but some days I wonder just what I signed up for. At the same time, there was never any hesitation when we were handed the diagnosis: I took a deep breath, let it out, and then said, "OK, so what do we do about this? I'm ready."

I hope with all the hope I can muster that baby #3 is as perfect as she can be for you. But even if she's not, I know you have the strength to face the challenge and get to work doing the best you can for her.

You're right, though. Just when I start to feel like I'm drowning, something happens to save me. BlogHer saved me last weekend. I needed that time.

(And this post? I'm totally crying right now. Seems like I've been doing that a lot this past week.)

Moms have to be so brave. When push comes to shave you come up to meet the challenge and hopefully those around you will support you whenever and if ever that time comes.
Hang in there!
Ciao
Anita
www.ovolina.com

I would give anything to still be pregnant. I miscarried last week. I'm still looking for those reserves inside me that are going to lift me up and help me move forward.

I hate the cliches. The 'that which doesn't kill you makes you stronger' bullshit. I don't know about you, but it's never made ME feel better. What I do know is this: you will astound yourself with what you CAN handle. So many times I've thought 'oh god, no, not that. I can't handle it', only to surprise myself. And sometimes the surprise IS just getting up in the morning and making sure the children are fed and reasonable happy. Don't beat yourself up over being normal. I think if you can stop worrying about worrying, you will probably worry less. :-) right?

I really think all parents are heroes. A firefighter who saves a beloved cat is as much a hero as the one who saves a human. My point is that you're already a hero.

You are allowed to be scared right now. It's part of being a mother. Even if there weren't problems with the soft marker test (which we all know to be unreliable. No matter what happens, you'll always be afraid that something will happen to your children.

I seem to remember a post about a bicycler in the rain. That analogy has gotten me through a couple of rough days. Maybe you know who wrote it?

When the baby is born, nothing will matter to you except how overwhelming your love for that little person is.

But if you have to be, you will be. You might not think you have the strength, but from what I know from reading this blog, you will find it if you have to. And if you DON'T have to, you will just appreciate your baby's brand of perfection even more. At least until she wakes you up three times a night and pukes on your best shirt and... well, you know the rest. :)

Sigh..So much I can say right now. We lost our daughter soon after she was born..Months before my ob thought she had the down syndrome marker. Now we wish so much that was all that she had. I know it's scary playing the waiting game but I firmly believe that when your baby is born, once again you'll fall in love instantly, regardless..

I think all moms fear what you wrote about. Wonderful post.

I would rather have my son who was born with spina bifida than not st all. He is 10 and has had 9 surgeries. He is the hero not me. My job is to make sure he is happy and as healthy as can be.

Sheri -- You're a hero for being tickled by a potholder.

And all of you seriously ROCK.

ROCK ROCK ROCK!

I hear people say all the time that they don't think they could raise a child with special needs and it always make me smile just a little bit. I used to say the exact same thing before my son was diagnosed with high functioning autism. Then all of the sudden I was doing it! I make mistakes, I often flat out fail but at the end of the day I do it and I usually do pretty well at it. It's amazing what love gives us the strength to do.

The real heroes don't think they are; that's part of it. My mom used to say that heroes aren't the people who aren't scared, they're the people who ARE scared and keep going anyway. You are a remarkable woman. If you can bring half the joy and strength into the house that you supply to your readers and friends you'll be a strong woman indeed.
I will say this soft marker thing drives me nuts; I've known so many women who've gone through such miseries all for nothing. Of course that's great, but I wonder if a little knowledge is a dangerous thing. I don't know. Probably being stupid. But no matter what happens there is a huge community that loves and admires you and you are stuck with us.

*hugs*

You had me in tears on this one.
The heroic part- your writing. You share so much that people are afraid to talk about. That's certainly why I keep coming back.
Meeting you last weekend confirmed what I already believed, which is that *you* are an amazing woman!
That said, I know we all have to sleep with ourselves at night, so regardless of what we achieve or how well we handle ourselves, we still have our limitations and demons to deal with.
Pregnancy is overwhelming. We have so little control over it. Just deep breaths, and enough sleep. That's all I can offer.
It was great meeting you last weekend. You added tremendously to the whole experience.

Everything everyone above me said is spot-on, and I don't want to minimize it at all. But: I'm an example where my pregnancy showed soft markers, too, and my bebe is fine. Worries were for nothing. Maybe all this is just so you realize you really can handle anything; but not because you're going to have to deal with anything out of the ordinary.

There will always be someone out there who has it worse than you, who would give both arms to have what you have. You can't beat yourself up inside for being afraid of challenges you don't feel up for, of being afraid for your child's health and well-being. But at the same time you can't live your life hiding in fear of what may be. There's a balance in there, and even though you feel like you're teetering on the edge I have the feeling that overall you're doing just fine. Go ahead and worry a little. We all do. It's natural.

Yeah, I'm back. I just wanted to let you know I got my pot holder today. You know, the thing from t-mobile. I wanted to thank you. So, thanks. I've been feeling not so great today and then the fed ex guy came by with a package--for me. maybe I'm just easily amused but it made my day. Hope you are feeling better.

I know--the worrying can make you crazy. Just know that whatever it is we're faced with, we can adapt to meet the challenges. We have to--we're the moms.

My 2 year old fought cancer and lost her battle last year. It's difficult to say which was harder - watching her endure the torture of cancer treatment or losing her. By the grace of God, we get through it one day at a time.

Now I am no hero to be sure. I didn't ask for a child with cancer. But I got one. And I wouldn't trade a moment with her for anything. I long for the day when I'll see her again in heaven, healthy and happy.

The moral of this story is that when faced with life's toughest moments, you somehow summon the strength to perservere. Even if you don't want to.

This post made me cry.

When Jake was diagnosed, I e-mailed my best friend and wailed,

"I don't want to be an advocate! I want to be a mother!"

After working with special needs kids, I had seen the Hell those Moms went through and it scared the crap out of me.

Her response?
"EVERY MOM is an advocate."

Even though there have been times where I thought I'd drown, I wouldn't change a thing. Being his Mom has made me better at my job, better as a Mom, better as a PERSON.

I learned to just face what's happening today. Tomorrow isn't in my control, and when I get there, I'll deal with that too.

I had two exemplary, healthy pregnancies. One yielded a kid with autism, the other yielded a kid with a respiratory disease. No explanations.

The whole parenthood thing seems to be about figuring how to manage with whatever surprise package gets lobbed your way.

You can't compare your kids and your concerns and your fears against what anyone else is going through; it's just not on. And that way lies madness.

It's ok to be scared; give yourself a break.

I spend a lot of time thinking that life is just surviving to the next day, and I don't know WHAT that's supposed to teach me.

I spend a lot of time thinking that life is just surviving to the next day, and I don't know WHAT that's supposed to teach me.

We all do it (and I know I'm giving advice here that I myself probably couldn't follow, but...) you can't compare your personal anxieties/worries/fears/issues with other peoples' -- it's apples and oranges. For you, this is hell... other people have their own version.

And, not really knowing you if only thru your amazing posts, just seeing that you can write about it and put it all out there, screams capable.

Every mom worries. I was assured by my OB that the chance of my last two children would be next to none because they have a different birth father. So far, one is considered on the spectrum with aspergers and the other is in a special needs program and we will deal with that possibility next school year. You do what you have to do. I do what any other mom would do. I love my kids, you love yours. Do any of us actually think we would WANT our children to have a disablility or handicap???? Hell no. But they are our children, warts and all, and we love them--warts and all. Motherhood isn't easy no matter what child God gives you. Really.
I will keep you in my thoughts and prayers. But I know, in the end, no matter what, you will be ok. You are a strong woman and will have a beautiful baby.

Kristen - When I was 7 months along with Jack, my second child, we found out he had a cardiac condition that carried with it a high (70%) chance of either Down's or Di George... we were so worried about his heart that the other took a backseat, but I remember the anxiety of wondering how I would successfully parent a child with special needs... I was fearful of so much back then... but I think, in my heart, I knew I would just do the best I could... just as you will and do.


I believe that all moms are heroes, some just have way more too do in their day.

There's nothing wrong with being scared for your baby or for how she (did I see that right?) will change your life, because even if perfectly healthy, your life will still change. Just know you're not alone. We're all here for you when you need us.

I admire your honesty.

Not a hero here either. I have two children with Autism. It just makes me a mom like any other struggling to get through the days. Some are better than others. See the thing is when you get up in the morning you never know what the day is going to bring you and the older you get the more you just roll with it. I try to be a good mom, some days I am and others well... I hope the next day will be better.
My husband said it best, just keep putting one foot in front of the other, that is really the only thing we can do. Still standing.

During my wait for results, we went out for dinner, and happened to sit next to a family with a little Down Syndrome girl.

She studied me for a few minutes, and then let out a breathtaking smile. I couldn't help but smile back.

Her mother noticed the exchange and gave her girl a hug before saying to me "You know, she doesn't usually react to strangers that way. Must be something about you."

I thought at the time that the something might be that I'm carrying a baby like her.

That wasn't it. I don't know what it was, but I'm grateful for that smile, and for that exchange.

The waiting is the hardest. Hang tight.

I wish I had some words of wisdom but I don't - just want to say that everyone is entitled to their fears, no matter how blessed they are.

Okay, I wasn't going to comment about this one- I just don't know what to say, but I came back to leave tell you- Stop it, it's not worth it. Guilt is the shittiest part of motherhood and you can't say that even a mother who lost her child WOULDN'T have been worried about a marker for Down's. We would all be worried and anxious, for ourselves, our families, our other children- even if we found later that our (your) worries were unfounded.

My favorite quote, from Nancy Reagan:

"A woman is like a tea bag. You can never tell how strong she is until you put her in hot water."

Of course no one would choose to have a child with any health issue, but I think that if the chaos of the universe, or God, or whatever you believe in, has put you into a situation where you have to face your fears, you'll find that you are able to rise above your (perceived) limitations, and you'll do it with the grace and humor that you use to face everything else in life.

No matter what, it's going to be ok.

Pregnancy is such a frightening time. We're so vulnerable, and our babies even more so. I think your feelings are 100% normal, and I think you're handling it with more courage than I could.

Blessings,
Amy

I understand how you feel. I work with autistic children and while I love them to death and I love my job, I also love coming home and getting away. I'm terrified that when I have a child, my child will be autistic because I work with them and I'm so good with them. The thing is, I don't want an autistic child. I know many people with one, and if I had one, I would be ok, but I don't want one. I feel horrible admitting this, and it makes me feel like the worst person alive, but know that I completely understand. I don't want to be a hero.

These worries weigh on every mother's mind. You've just articulated the fear that the rest of us wouldn't or couldn't admit to.

Doing what you need to do for your kids is heroic.

No silver star needed.

It's not selfish or wimpy to lose yourself in the middle of your own moment sometimes.

I don't think any of those women would begrudge you that.

I agree with the previous commenter. My oldest daughter has autism and it's something I never thought to worry about while pregnant and going through all the genetic testing (which all came back perfect.) But I'm certainly no hero. Just doing what I need to do for my kids, just like the rest of us.

You have enough stress right now. Please don't beat yourself up comparing your problems with others. It's good to see the wider context of your problem, but it is your problem & you are allowed to be totally wigged out & obsessed by it without the guilt that comes from comparing your pain to others.

I had a reasonably high Down's chance (1:50) based on a nuchal test. (You know, considering for my age it should have been something like 1:three billionish.) I worried the entire time. No Down's. My son has autism. I never thought to worry about that. There is always something, and worry doesn't help - so why can't we all stop doing it. Oh, and not really a hero either. My DH is though.

My oldest daughter is 16 and has Down Syndrome. Am I a hero? Hell no, I'm just a mom. I hate it when people tell me that G-d "picked" me. WTF?? I had a baby with an extra chromosome- big whoop. I have to be honest and tell you that I wouldn't take that chromosome away for anything- though it took some time for me to feel that way.

My daughter has an austic child and she does not feel like a hero. She hates when people thinks she is. She is just a struggling Mom trying to do the best she can with the cards that were given her.You can say I was sorry I have no shoes til I saw the man with no feet,or maybe some of us think I'm sorry I have no shoes when some people have 500 pairs.There are both sides to see.I hope your child is perfect in every way.

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