Down Syndrome

Today, November 19, is National Adoption Day.

To celebrate all of the different points of view about adoption that we here at The Band know you have, we're running an adoption carnival.

What better way for us to learn more about YOUR experiences?

Were you adopted? Did you adopt? Are you an adult adoptee? Are you a first mother? Did you have a great experience? A miserable one?

We won't know until you tell us!

So, The Band, it's time to Band Back Together for adoption!

I always knew I wanted to be a foster parent. After moving South, I inquired about the process and signed up to get started. Shortly after I was given my license, I saw a little girl featured on the nightly news. She was just over a year old and she looked like an ornery old woman! She had Down syndrome and the fuzz on the top of her head was bright orange. She gave the news anchor an evil look every time she tried to put a bonnet on her head. Then she'd reach up, grab the bonnet and throw it onto the floor. She was having none of it.

She kept scanning the room, refusing to smile or show a single endearing quality.

I fell in love with her. I immediately called the number they gave and began a fun game of call here. No. Call there. No. Call this person.

I finally found the right person. She put me on the list and promised to keep in touch. I called her a few weeks later and was told we were in the top five families being considered. A few weeks after that, we were brought in for a full-disclosure meeting. We were given a complete medical history on the child and were essentially told everything that was known about her.

At the end, we were asked if we wanted to move forward.

Yes! I said. A million times yes!

A few days later, we were asked if we wanted to meet her.

Yes! Oh, yes!

When I walked into the room, I saw the same sullen child. She had two different shoes on her feet and she looked like a bruiser! She refused to look at me. When I tried to engage her, she turned her back on me, literally. Her adoption worker pulled out a sippy cup of juice and some crackers.

I began the very slow process of bribing her to interact with me. Ever so slowly, she came around. By the end of our visit, she had fallen asleep in my lap, head on my shoulder.

I was in love.

That day, driving back home, we went over a bridge. Something in the water caught my eye and I turned to look out the window. Three dolphins swam right below where we were driving, heading in our direction.

A few days later, we got the call. She was ours, if we wanted her.

Yes! Absolutely, yes!

The day she was dropped off, it was just the two of us. I, once again, had to slowly bribe her into interaction. I showed her the room I had ready for her. I pulled out all her new toys and read her a few books. I introduced her to the pets and to her baby sister. I showed her around the house and brought her into the back yard.

Finally, I sat on the couch with her, watching her watch Signing Time. I finally decided she probably didn't need me in her face and I went into the connecting kitchen to unload the dishwasher. I turned my back on the washer to put something up on one of the higher shelves. When I turned back, she was sitting on top of the open dishwasher door, handing me a spoon.

It took her a few days to let me see her smile, but once I had her won over, she opened up and became an interactive, adorable little imp. Within a few months, her adoption was final. We celebrated by taking her out for french fries.

She is now more happy than sullen, but there is still that tough little girl underneath her excitement and zest for life. And I wouldn't have it any other way!

She reminds me of where she came from and just how far she's come!

I've lost a baby, but I didn't carry her in my womb. My story isn't one of a mom who miscarried.

I didn't chose to give her up for adoption. My story isn't one of a birth mom.

She's still living. My story isn't one of a mom who buried her child.

But I was her mom, and I lost her.

I met her when she was four weeks old; all four pounds, three ounces of her. She was six weeks premature and she had Down syndrome. Her birth parents chose us, me and my husband, to become her parents. They chose us to raise their child. To guide her. To love her.

For nearly two and a half years, that's exactly what I did. I raised her.  I taught her to roll over, to sit up and to use sign language to communicate her needs. I dressed her and bathed her. I nursed her through a number of illnesses and the surgical removal of a staph infection. I danced with her. I read books to her. I held her in my arms. I loved her with all my heart.

She was a night owl. She would stay up with me long after the other kids went to bed. It was our time. Eventually she would fall asleep in my arms, and I would lay her in her crib.

I was her mom. She was my daughter.

On a cold January day, all of that changed.

My husband and I had decided our marriage was over. I shared this information with her birth parents, out of respect. After a brief period of thought, they told me it didn't change the fact that I was her mother. I was where she belonged. They would rather she be with me, a divorced mother, than with anyone else. My heart was relieved.

We agreed (my husband, myself and the birth parents) to not share this information with the adoption agency who placed the baby with us. They don't do single-parent adoptions, and the birth parents no longer had legal rights. We all agreed to finalize the adoption as quickly as possible, and then my husband and I would proceed with separating our lives.

But my husband broke our agreement. Long before we discussed our marriage being over, he had begun an affair with our daughter's in-home therapist. When I found out, he promised me nothing would compromise the adoption. He swore both of them were in complete support of finalizing the adoption, no matter how long it took. Whether he was lying then or he changed his mind later on, he lied.

The adoption agency received an anonymous phone call regarding the deterioration of our marriage. The individual who called had intimate knowledge of our family, our marriage and our daughter.

On that cold day in January, the adoption agency came for a final visit before we were to begin the finalization process. They were over an hour late. I knew something wasn't right. When they showed up at my door, a policeman was with them. They calmly explained they were there to remove my daughter. They refused to finalize her adoption due to the state of our marriage.

I don't know how I managed to hold it together while I gathered her things and gave them instructions on her care. I tried to keep a smile on my face for her. She was looking to me for cues on how to react. I didn't want to scare her. I didn't want her to be afraid.

They carried her down the walkway that led from our home. She looked back over the shoulder of her adoption worker and smiled at me. She waved her tiny little hand with her thumb, forefinger and pinky raised. She was signing "I love you" just as we always did when we parted.

The policeman left when he was secure in the knowledge that I wasn't going to jump in my car and follow them. I closed the door behind her and watched until I could no longer see the vehicle that carried her away. When I turned around, my husband stood facing me. I crumpled to the ground, sobbing uncontrollably.

"I'm sorry," he said.  "I'm so, so sorry."

That's all he said. Over and over again. "I'm sorry."

It took me awhile to realize what he was sorry about.

He knew they were coming. He knew the call had been made to the adoption agency. He didn't want to wait for the adoption to be final before he could carry on with his affair. He didn't want to wait until he could see his girlfriend whenever he wanted. Being with her was more important than securing his daughter's position in our family.

And so they took her.

I lost a baby. But I never carried her in my womb. For over two years I carried her in my arms. Now, I carry her in my heart.

Normally, I think positively about our experiences. But with Maura’s birthday looming, this thought popped into my head.

There's a loss you experience when your child has special needs. We didn’t discover Maura had issues until she was fifteen months. I'm still amazed by how we walked into the doctor's office with a perfectly normal child, and left without her.

In her place was this child who needed blood tests for chromosomal disorders. Who had delays and physical markers for genetic issues. It was as if we were handed a changeling. I remember being very angry with our beloved pediatrician when he pointed out the epicanthal folds around Maura’s eyes. Until he pointed them out, I just thought she had the prettiest blue eyes.  After he pointed them out, they were all I could see.

Eventually though, I did stop seeing them - but I never forget they are there.

When you have a child, you have dreams of their future: first steps, first day of school, making friends, growing each year. Eventually those dreams take you to their high school graduation, college days, wedding days.

When your child has special needs, you find yourself giving up those dreams. One by one, as the delays become more apparent, you give them up.

At first it was, “Okay, she’s just going to have to catch up.” Then it was, “Okay, maybe she won’t go to college.” Before we could truly process things, we let go of dreams and dealt day-by-day. It was easier that way.

I used to look at Maura and try to see the child she should have been: the one who walked on time. The one who talked on time. I could practically hear her chatting my ear off, asking “Why?” four thousand times a day. I’d try to see what she’d be without the delays that kept her from maturing. What she’d be doing if she was a typical three-four-five year old. I could almost see that child Maura could have become. That child she was for those first fifteen months. The one who doctors kept saying she might become.

One day, I realized the doctors had stopped saying “She might catch up.” That child she could have been was barely visible.

Maura’s about to turn seven. She should be doing so much. She should be finishing first grade. She should be potty trained and dressing herself and worrying about what some other little girl said on the playground. She should be reading and solving math problems and telling me how she’s going to be a rock star when she grows up. But she doesn’t do any of that – that child was lost the day the doctor said “I want to send you for a blood test.” We were simply too naive to realize it.

One day, when Maura was three, I had her with me when I went to see my therapist. She was watching Maura doing her thing, then said matter-of-factly, “You know, she'll probably always live with you.”

It was the first time anyone dared to say that to me. I answered yes – and realized that I did know that. It was an ugly reality: “your child will never graduate high school, go off to college, get married…no, she will never be independent."

It was something that needed to be acknowledged. I acknowledged it...then tucked it back into the closet. I know it’s there. I just don’t need it staring at me.

More ugly truths had to be addressed. The child Maura was supposed to be was also supposed to be perfectly healthy. While, with our older three, we rarely saw the doctor, soon we were seeing doctor after specialist. I learned which labs did the best blood draws on children and my way around the medical center. Things mellowed out, only for her to have a seizure and start us down a new path.

One we’re still trying to figure out.

The way she started kindergarten was not how it could have been. The biggest drama should have been having the right backpack and lunch box. Instead it was, “Can the school even handle her?” We had a meeting with fourteen other people to determine that. We had the same sort of meeting to determine what her first grade year will be like.

I came to the realization that even if I were magically given the choice of keeping Maura as she is, or have her become “normal," I choose her. Now. As she is.

At the end of the day, she really is an amazing little creature, full of joy and happiness. Making her "normal" might take that away, that's not worth the risk. On another special needs blog that I can no longer find, a father wrote that his daughter was the way God wished us all to be – innocent and joyful. I think of Maura that way. I joke that the world would be a much better place if we all had Maura’s attitude.

But that doesn’t mean I won’t always be a little haunted by the child she could have been.

I know I’m not alone in this. I think this happens to other special needs parents as they watch their children struggle. We can love our kids, never want to change them, and still wish we could take away the struggle. We see glimpses of the child they could have been.

I’m beginning to realize it will never go away.

When I found out about this assignment, my friend Nicole's name immediately popped into my head. I just don't think there's anyone more deserving of a moment in the spotlight for all that she does. So, my dear: this one's for you.

Nicole and I met many moons ago while we both worked for a children's book publishing company. Our friendship developed to the tune of life's ebb and flow. I remember the day her father passed away, visited her at the hospital when she gave birth to her beautiful daughter, and tried to get her out of the house whenever she needed a girl's night out. She sent a basket to my family when my grandmother died, got me on my feet again when I ended things with my ex, and has been a rock whenever I needed an ear, a hug, a laugh, a lift, or a drink.

She is a remarkable friend to have.

In December 2007, Nicole gave birth to her second child: a baby boy by the name of Nicholas. Though I was on a cruise at the time, I was expecting the text to come in and was surprised when I heard from a mutual friend instead.

It wasn't until I returned home a few days later that I learned that Nicholas was born with Down syndrome.

“I will never forget the moment the director of the NICU came to see us in Nicholas’ 'room,' pulled a wretched putrid-colored curtain around us (like that flimsy curtain could shield me from the horrifying news), and told us that 'the third chromosome is present…your son has Down syndrome…I’m sorry.' I let out a guttural scream and basically folded in half. My husband, ever the logical thinker, asked, 'Will this affect his life span?' The doctor answered simply, 'Yes,' but that single word was like a hot poker in my heart.”

That winter I watched her go through the various stages of guilt, grief, sadness, and heartache, unsure of how to respond. I needed her to know more than anything that I loved her and both of her children equally. Nicholas would always just be Nicholas to me: a beautiful, happy baby boy.

Over time, the grief melted. Acceptance took root in Nicole's life. She devoted herself to fully research what she was up against and made the decision with her husband to get Nicholas the therapy he needed as soon as possible. She found a support group for mothers of children with Down syndrome, participated in walks to fund DS research, and she began to bring both of her children to social events once she realized how much her friends loved to interact with the oldest and newest addition to her family.

One day, not too long ago, Nicole sang her son's praises over dinner and the various milestones he had achieved against all odds. It was music to my ears. She was so overwhelmed with emotion she had to choke back tears. And she told me that her son has taught her the most invaluable lessons in life.

“He may not fulfill all the dreams I had for him before he was born, but I know he will continue to meet his milestones and accomplish great things in his own time. He makes his parents and his big sister so proud on a continual basis.”

The love that Nicole has for her family is nothing short of extraordinary. And to have been given the chance to follow along on this journey is something I'll never forget or ever take for granted. Thank you, Nicole, for inspiring me with your strength, compassion, and insight. I'm always proud of you, too.

Six years ago, I was 37 weeks pregnant for the first time. Perfectly healthy. No trouble conceiving, just saddled with credit card debt, late to get married, let's buy a house first 'cause we need stability - babies like stability. Mom and her beau were down to visit.

Sunday - We had Chinese food. Then we went to see some Steven Segal movie. The movie was loud.  Baby kicked HARD. We spent an hour picking out a ridiculously expensive frame for an otherwise cheap print. We took bets over dinner to see when our son would arrive.

Sunday night - Mom and her beau fly home.

Monday morning - walked the dog. Baby always slept through those walks. Took a shower then off to the OB before work for a previously scheduled appointment. It was close enough to our due date for weekly appointments. Laying there on the exam table. Nurse can't find the heartbeat with the Doppler.

Time stretches. Lose that giddy expectant feeling. Why can't that stupid bitch find it? More time - seconds?  Minutes?

Am no longer cheerful - nurse was always nice but she's also chubby and has bad skin. But she's self-contained, professional.  She says, "we'll go into this other room over here and let the doctor look with the ultrasound."

We switch rooms.

The doctor sees me in passing and looks quizzical. I see his face and that's the word - quizzical. Why the fuck does my patient have tears running down her checks? There are tears but I am not crying yet. Still functioning. Still anticipating relief - boy, baby, did you give mommy a scare!

We are soon in the - I think it's the storage room - there's stuff stacked up everywhere.

He looks. He puts his hand on mine. Which was on my belly. I'm so sorry.

Call my husband from the OB's office. Which is cluttered with FEET of paperwork. Don't you have a secretary? Remember thinking that if my husband is anything less than exemplary, if he blames me, I will leave him.

After he arrives, we go back to the ultrasound (is my memory right here?  WTF?)  OB notes reduced amniotic fluid - had I noticed any leaking?

Mark one - what did I miss?  Mentioned how hard he'd been kicking the night before.  Probably death throes.

Mark two.  I've only had this happen one other time but the mother thought something was wrong and came in. But it was her third pregnancy and she could tell the difference.

Mark three. He kindly does not point out that I am such an asswipe I was eating popcorn while my baby was violently trying not to die.

He provides us his schedule for the, er, delivery.  He had some time off and couldn't do it on this or this day.  So sorry to disturb you but I seem to be carrying a 37 week old corpse in my belly - do you mind?

Went home.  Tried to call my boss in the car to explain why I wouldn't be coming in.  That didn't go well - my husband ends up talking to her.  Feel cramps at home. Yippee - labor. 24 hours too late.

Dog walker arrives mid-tears. First of many many awkward conversations.

Back to the hospital. Social worker.  Long stream of well-meaning people. Go away. Am later moved to recovery room in wheelchair with deadbaby on my lap. Nurse says something in passing about the baby going to the nursery, must've been brought up to speed because she later comes in and hugs me, apologizes.  Mom flies back down and gasps at deadbaby in the incubator.

13 months later we have second child. Make endless stream of people uncomfortable when they ask if he's my first.  HOW AM I SUPPOSED TO ANSWER THAT?

Years later, after I have my third baby in four years, I decide it's OK to just say "Two."

But my second, though a joy and delight now, screamed for 9 months straight.  Colic - nothing actually wrong that we could fix (but, oh my, did we try).  And despite the endless pumping, the teas, the herbs, and the best efforts of various lactation consultants and the La Leche league, nursing does NOT go well.  It's probably OK to stop trying when the Nursing Nazis at La Leche say you've done your best, lots of mothers bond with children through bottles.  Yet you don't give up.

Damn if I can't nourish at least ONE child.  Many arguments with the spouse about bottles, formula, supplemental feedings.  But the boy stays at over 95% on the charts so I successfully failed to starve him or the extra formula my husband snuck him staved off malnutrition.

Fast-forward 2 years and we decide to try again. Because now that the boy has stopped screaming 24/7 he is the most fascinating little person.  Tomes have been written about mothers and their children which I don't have the skill to re-phrase and personalize but I am deeply in love and proud of my above-average contribution to the world.  He is FULL of joy, fearless, adventurous, affectionate. And has dimples to die for.

But are we ready? Hubby's work isn't going well but taking maternity leave in the summer would work out well for me. Again (sorry guys!) no timing issues. I've now hit the magic 35-year marker so my OB offers me an amnio which I instinctively agree to.  Tests?  All Good.  Best to rule stuff out - we don't need any more surprises.

Later my husband and I have a terrible terrible argument about the risks thereof.  I don't want a baby with Down Syndrome (There.  I've never before admitted I actually said that OUT LOUD.  Cue Irony.  This plot line is even too facile for the Lifetime network.  My hubby, the dear, has many faults, but has never ever reminded me of this.).

I eventually wear the hubby down and we go in.

I now have full-fledged access to the perinatal center. Advanced Maternal Age. Prior fetal demise.  Believe it or not you need to have more than one stillborn baby to be technically high risk (seriously?) but I think my OB makes a call.  We are there, my husband and I, for our Level II Ultrasound and the amnio. The baby receives a glowing review on her ultrasound (good girl!) and I am suddenly reversing myself... the neonatologist is wearing a scarf and matching yellow surgical gown.  She says that the risks of (what? risks of what?  I don't remember how she put it) after a clear Level II ultrasound are (ridiculously low).

She actually has the needle in her hand when I say no thanks after all, sorry to be a trouble.  She THEN says, oh good - given your history (amniotic band choking off baby's cord) I wouldn't have wanted to mess with the amnio anyway.

Mess with? Is that what you'd been planning to do? Oddly, it hadn't occurred to me that sticking a giant needle through it would qualify as 'messing with.'  Thanks for the full disclosure, doc - phrased like that I could have just conceded the point to my husband and skipped the fight.

Blood tests are clear, Fancy ultrasound is clear.

Maybe I can relax a bit?

But I still get to go back to the perinatal center for more monitoring. Good insurance, let's keep Mom relaxed. I get the same ultrasound tech for the next two visits. She seems bored - you really don't need to be here you know. There are usually people crying in the waiting room, overheard whispers with bad news. Low-grade anxiety but everything is normal, we are healthy.

It’s not like lightening could strike twice.

Every medical professional I encounter repeats this in some manner [NASA begs to differ].

Fourth visit, new tech. She asks a lot of questions about my first.  No, it wasn't amniotic band syndrome, which is an actual syndrome with statistics and a support group.  It was just a lone loose piece of tissue that wrapped itself around the umbilical cord and pulled tight when he dropped.  Like a hangman's noose.  They don't have statistics for that - we are lumped into the "cord accident" category.

I am relaxed, lying on the table in the dark, impressed with the tech's thoroughness.  Touched by her interest, as compared to the prior slouch.  She comes back in with the (different) neonatologist.  HeartHoleSurgeryHighCorrelationwith...

I am in risk-management - casualty claims.

I used to read jury verdict books for fun because they are adventures in randomness.  Bits of an airplane fall off and comes through your roof as you're making coffee. Spare monster truck tire falls off back of truck, rolls down freeway ramp, bounces over the guardrail and land on your windshield. No amount of defensive driving will prevent that. The truly non-negligent claimant is blindsided, no warning, no opportunity for self defense.

That's twice now.

Life 4: Me 1  (Life gets points for the nursing thing too, and for my last minute pathetic request for an epidural; I get the boy).

We hear more statistics and get the amnio done after all.

Best to understand in advance: Trisomy 21.

My husband says this for months, as if it's a better term than Down Syndrome.

I read message board posts from people who abuse "LOL" and emoticons, and use their/there interchangeably. I read impassioned essays about the importance of that 'S' - Down Syndrome, not Downs/Down's/downs.

Full disclosure here: I am a card carrying pro-choice the-world-is-over-populated leftie. But I don't even consider it. It helps that I'm at a Catholic hospital so no one asks but I was hoping someone would so I could throw something at them. Had the throw planned out - What would be close by? A stapler? Best not grab the Sharps box. Would aim to miss but don't have great aim so might hit them accidentally. Unlikely that anyone would actually prosecute, given the situation. Permission to behave badly? Granted. But I am disappointed.

Here's the thing -  In addition to my "Cue Irony" comment about DS I had also, in the course of a couple counseling sessions after deadbaby, mused that had my son NOT died that Sunday night, the lone loose piece of tissue could have easily just choked off only half his oxygen, leaving his heart beating but his brain damaged.  I have long pondered this - with the arrogance of not having to choose I said (again out loud!)  "I don't know if I would have wanted that."

One counselor agreed with me.

The goal of parenting is to turn little people into self-sustaining big people. I was such an ass. God may not intervene in sub-Saharan African but girl in suburbs in need of Life Lesson? Gotcha.

My daughter spent about a month in the NICU as a "feeder/grower."  She was full-term and moved through that place like Godzilla. [She was also stubbornly breech so came via C-section on top of everything else. I will never have the chance again to try for a drug-free delivery. We hadn't bothered to try during our first, what was the point?  I was happy to be heavily sedated.  And I caved with, what later turned out to be, just minutes to go during my second delivery.  More irony.  I no longer remember why I wanted to try without drugs - earn a merit badge for toughness?  I think I get one of those anyway]

We tried to nurse a couple times - she latched on once or twice for a second but didn't have the strength or energy to take a bottle, much less bother trying to get a couple drops from the useless bits of mockery that were my boobs.

We took her home on a feeding tube and then spent one hour, eight times a day giving her a bottle.  Let me clarify that - every three hours, we tried to give her 4 ounces of high calorie formula. Thickened, because as the fluids built up in her chest cavity they pressed up against her stomach and made her violently reflux.

It took an hour to let those 4 oz drip down her throat.  Sometimes we gave up at 3.  We slashed open nipples and squeezed - oral development can fuck itself. She often spit those precious ounces back up, vomiting with a height and distance that frat brothers would boast of.  Once she hit one of the dogs as he walked past.  Two hours later, we'd start over again.  There was a lot of TV.  I pumped for a while during hour two of that cycle because if anyone needed breast milk it was this girl.  But my son needed a mommy too and it's hard to play cars with nipples flying back & forth.  And my contribution was, shall we say, negligible.

She was also on a complicated pharmaceutical schedule which included digoxin. Which is what someone tried to kill James Bond with in one of his movies.  It's derived from foxglove which I have in the garden.  I spent a lot of time thinking about the irony of this while I sat with her on the couch keeping her alive with a non-developmentally-sound plastic nipple in her mouth.

When she's four months old, her heart has grown so that it's as big as a walnut. This makes the surgeon happy and we get a go date.  She weighs almost eleven pounds.  I've transferred departments and my new boss of one day comes by before I'm about to take leave and says "I'm sure everything with be fine."  Fuck you buddy.  FUCK YOU. Later, I realize that this is most personal thing he's ever going to say to me and the effort involved must have been staggering.  I've forgiven him for tempting fate like that.

Open heart surgery.  They stopped her heart and lungs and sent her blood through a machine for 8 hours while they cobbled together a functioning structure from what wasn't.  It goes well and she is discharged from the hospital a week later, the day before Thanksgiving.  Think about that for a second - they sliced open her chest, sawed through her rib cage, rearranged the internal structures of her heart and sent her home seven days later with not even a script for Tylenol. Because OTC Tylenol will be just fine.  My daughter KICKED ASS (apologies to Aunt Becky).

She gets home, sucks down her bottle in minutes and looks around for more. We can suddenly hear her cry from across the room. Before she was so weak before we could not hear our baby cry. We attributed a lot of her weakness to Down Syndrome - turns out, nope, that was her spending every calorie she had trying to keep the leaky sieve of her heart moving. Did I mention she kicked ass?

Heart now working, she starts to sit up, eventually starts walking, and gets into everything, just like her brother did.  Her laugh is magic and her first (and admittedly only, so far) word is happy.  Happy baby.  She loves to play with my hair and to throw the dogs' toys for them. Though she doesn't so much throw as drop from up high on the couch. Nonetheless the dogs appreciate her efforts (or are starved for affection, but that's a different story) and they return, again and again.

She still does not like her grandfather (sorry Papa!). She has dozens and dozens of hair bows and cute dresses.  Strangers react warmly to her. I do not trust they will treat her as well in ten or twenty years. She is only nice to those with long hair. We pay a LOT of money for life insurance and to an attorney to set up a special needs trust.  Meanwhile we sometimes run out of grocery money. I think the life insurance is our way of conning Fate into keeping us both alive for her. Chances are, we will outlive her.

She gets minor outpatient surgery on her eyes and will probably need a second round because, obviously, we fall into the 10% re-do category. 10%?  Practically a money back guarantee!  Talk to us about the statistics - we are the .001 percenters. Though I don't actually know what the percentage is of a false negative blood test and level II ultrasound. I spend a lot of time thinking about it but don't do the research because I don't think it matters anymore.

It shouldn't matter. Nonetheless, I buy lottery tickets.

There are other tangential stories - my husband was wearing the same shirt we delivered my first son in on they day we learned my girl would need heart surgery. The shirt has now been put away, along with the other trinkets the hospital gives you to remember your deadbaby. He has a closet full of clothes - why that shirt, that day?

Both my SIL and next-door neighbor had poor test results and ultrasounds and very good chances their babies, only slightly older than my own, would have DS.  Not 1 in 300-something.  1 in 34, 1 in 20. It's a Catholic group - they prepared themselves but were passed over.

I was not raised in a church. I don't think I believe in god - I can't even decide if God should be capitalized.

I have developed a strong loathing of our local church school since they won't even TRY to teach my daughter - the adorable representation of everything they march and lobby and pray about. Fucking hypocrites. I think there are too many unwanted, unadopted children in the world to spend time arguing about frozen embryos*.

But my dirty little secret is that I agree with the right wingers ...life is precious.

It is a fucking miracle we are here and if we are lucky enough to make it then we should take full advantage. I am newly and acutely aware that taking advantage doesn't necessarily mean college, travel, and catching the latest gallery opening. Sometimes it just means blowing bubbles in the grass and throwing the dog's Kong.

I may not believe in God but I think he passed over my neighbors and gave me my daughter and I am profoundly and deeply thankful that he did. Because I LOVE blowing bubbles on the grass and throwing that foul slimy Kong to make my daughter laugh. There's a lot of crap online about being "chosen" and "special kids for special parents."

I am loathe to join that crowd - they seem to be the same people who believe God supports their football team and doesn't notice the starving babies because their particular denomination doesn't have a building in that particular country. I am more comfortable being a statistical freak.

On the rare occasions our story is presented in toto, it usually elicits something along the lines of "holy motherfucker" (and the ever annoying "how do you do it?"), but there are worse stories out there.  Some of my online browsing is spent ritualistically reminding myself of this.

Shameless schadenfreude.

But we have health insurance, a job I enjoy when I don't feel crappy for ignoring my kids while I'm working, and our house payment is current, even if the other bills aren't.  I am still married and actually still like my husband. At least 80% of the time. We have 3 dogs, two kids, kisses, and bubbles.

If I start counting, it's not Life 4: Me 1, it's me WIN.

My rambling narrative can easily be mocked - "Mom Loves her Kids, Struggles with Faith" or "Mom Appreciates Life more after Loss."

I don't blog - well, okay, I have one but it's only pictures of the kids and only the grandparents look at it. I wanted to keep it private but Gigi couldn't manage the password. I don't write anything there except the occasional explanatory caption. Better writers than I have described the peace that comes after being slapped around by fate. I usually gloss over our story - it makes people squirmy if I provide any details, or even relay in person.  Not really cocktail party conversation.  But it is MY story - so I will succumb to the temptation of wet concrete, or a penknife and tree trunk and post it here.

We were here.

We are happy.

Maybe it's not a Mushroom Print for God, but rather against (for? to?) Fate.  Fuck You Life - you sent us a semitruck full of rotting lemons and we turned them into fucking lemon meringue pie.

- Me.

PS.  This story makes my OB sound like an ass but he really was very kind and broke the news as best he could and then called several times after to see how we were doing.  We moved out of state halfway through my second pregnancy so he wasn't able to deliver my son but sent a nice note after receiving the birth announcement.

Later, ultrasounds techs assured me NO ONE would have picked up my little uterine landmine at the standard 6 month ultrasound, three months earlier. It probably wasn’t even loose yet.  The baby was growing well, the heartbeat was always normal - there was no warning. He was not negligent and we never considered a malpractice claim.

*More tangent:  I would like to adopt, because we sure as shit aren't going to try for any more children the old fashioned way, but we can't afford the extra milk right now, never mind the fees.  I worry about RAD and whether my daughter with special needs, ass-kicker though she is, could hold her own. I worry that a traumatized child would need more time than I could give since I have to work to provide for my other two. But we will move forward soon - I'm sure it will be OK, right? Right? (cue ominous music, shot of storm clouds... strap yourselves in, Act Three is sure to be a doozy…).