Sunday, March 17, 2013

The Story of Us

I started writing this post four different times.

I wrote explanations and intros and funny anecdotes. But this post? It doesn't need any of that. What it needs is me and my little man and lots and lots of time.

No editing. No thinking. No grammar checks or silly references.

Just the truth.

My son has Down syndrome. It has affected me profoundly; however I don't want it to affect him. I have never been more blessed. I feel tremendously responsible for his well-being. 

I'm on a mission to tell others what it really means to love someone with a disability. To break stereotypes and educate those who may not know otherwise. To share this journey with others who are on the same path. To let them know that they aren't alone.

I am special needs mama, hear me roar.

It's redundant, I know. I just keep saying the same things again and again. Slightly tweaked.

I even said that this wouldn't be the Down Syndrome Blog. Which is funny, because that's exactly what this blog is.

Turns out I like to come here and write about Down syndrome. About my son. Our new life.

I like it because I didn't always feel this way. 

I like it because I never in a million years imagined I would be in this place.

Grateful. Happy. Blessed. Amazed. Thrilled. 

In love with this little boy.

I think before our kids come into this world, we all have an idea of what life will be like once they arrive. It's fun to what-if. To imagine. To envision this new life that you can never really comprehend until it actually happens.

I never knew what type of parent I wanted to be, other than what we all know -- the exact opposite of our own parents, of course. But I did have a vision of my children.What they would look like. What they would say. Where they would go. Who they would be. 

Blonde. Blue-eyed. Full of life. Outgoing. Funny. Athletic like their daddy. A little weird like their mommy. 

And so when L arrived, it rocked my world. Yes, she had hair of gold and eyes like the sea. Yes, I think she'll be athletic. Yes, she's definitely a little weird like mommy. 

But she was just so undeniably her. She wasn't me reincarnated. She wasn't Patrick.

She was ELLE.

And it was is terrifying. And glorious. And challenging. And the most humbling, amazing experience of my life. 

So when we found out we were pregnant again, I thought two things:

1. Who is this blue-eyed, blonde-haired person going to be?
2. He will probably be nothing like I imagine.

Oh, if I'd only known...

(I have this awful habit of beating myself up for being naive back in those days, which I'm trying to work on. But I was so naive.)

I never, ever dreamed of my children being anything but Perfect. When it came to my pregnancies, my biggest fear was having a c-section.

The second time around, it was old hat.

Our little one would come. Hopefully, just as effortlessly as L had. He or she would be perfect. The new baby. And eventually the middle child. Life would go on more or less how I imagined.

When we found out he was a boy, I was overjoyed. One of each! Not everyone gets so lucky!

It was all about choosing a name. Designing the nursery. Telling L about her new little brother.

All of the wonderful things that come along with expecting a baby.

And then. 

Just. Like. That. 

Everything changed.

When I was 22 weeks pregnant, we went in to have a routine fetal echocardiogram. Patrick was born with a heart defect that resulted in him having a stroke and open heart surgery at the age of 22, and we wanted to make sure that it wasn't hereditary.

We had the same appointment with L, and all I remember was that it was my favorite ultrasound because she was so active and I got to see her for almost an hour.

This time around, I remember things a lot more clearly.

We went and the tech did her thing. Baby boy was active just like his sister. He had the cutest feet and the Alexander nose.

But I knew. 

I can't tell you what or how, but I just knew.

When the ultrasound tech left the room, I turned to Pat and told him that something was wrong. That I saw it. That it wasn't right and they're going to get the doctor so he could tell us whatever horrible thing it might be.

Pat was a little taken aback, because he had no premonition whatsoever. So when the doctor came in a few minutes later to confirm what I had already known, we were floored.

It was the first of many, MANY conversations that I only heard in bits and pieces through tears.

There is an abnormality. Maybe an ASD. Probably hereditary. This is why you're here. Doing the right thing. Finding out early. Our equipment isn't as good. Better at the cardiologist's. Make you an appointment. As soon as possible.

As soon as possible turned into nine very long days.

By that time we had come to grips that our child might have the same heart defect as Patrick. But hopefully not. Maybe it was just a little hole. Maybe it was something that would close on it's own. Maybe it was nothing at all.

We held hands through another 30-minute ultrasound.

We heaved and cried and protested through another piecemeal explanation.

Major heart defect. Very serious. NICU. Heart failure. Minimal weight gain. Labored breathing. Inability to eat. Open heart surgery. By the way. Linked to Down syndrome. You should be tested.

I'll skip over the fact that when I posed questions during this very convoluted, very high-level explanation, I was told, "Please don't ask questions while I'm speaking. I will cover everything in my spiel and then you may follow up with any concerns afterward. If there are in fact any."

His spiel was my CHILD.

His 5-minute text-book explanation was our life. 

So we left with a pamphlet - When Your Child Has A Congenital Heart Defect - and three broken hearts.

We were terrified. Our world was spinning. 

We took a crash course in cardiology. In Complete Atrioventricular Canal Defect. AV Canal. AVSD. CAVSD. (Choose your poison.)

There was also that By The Way to tend to. Linked to Down syndrome. You should be tested.

I was a mad woman. I feverishly tracked down the Maternal Fetal Medicine specialist and after several unreturned calls, I finally got him on the phone.

I was frantic. Crying. Spewing out information.

He has AV Canal. He has to have open heart surgery. Is my pregnancy at risk? They said it's linked to Down syndrome. Is this true? WHY? Why was I told that I didn't need to have a nuchal translucency and a quad-screen? We could have known if he had Down syndrome earlier. Now I have to either have an invasive test or wait it out. WHAT DO I DO??

And to this day, I owe that man. He was so calm. So kind. So helpful. The first conversation that I heard clearly.

First of all, I'm sorry I didn't return your call. Today is my day off. I'm sorry to hear your son has AV Canal. This will not affect the pregnancy, but we will have to monitor you closely. It may affect the delivery. Yes, it is linked to Down syndrome. In fact, it's a very hard marker. We didn't do the nuchal translucency and the quad-screen because you aren't at high risk. You don't have a family history and you aren't of advanced maternal age. But to be honest, those screenings don't prove anything. It is a huge misconception that they can tell you whether or not your child carries the Trisomy 21 gene. They merely screen for a number. A ratio. A possible risk. You still have to have further testing to know anything for sure. I've seen women who are supposedly at risk have perfectly healthy babies. I've seen women with supposedly no risk have babies with abnormalities. At this point, I would give you 50/50 odds. I would definitely get tested.

I got off the phone with an 8:00 appointment and a lump in my throat.  

Two long weeks later, I spoke to him again. Only this time, there was a lump in his throat.

So sorry. The test. Positive. Your baby. Trisomy 21. Down syndrome. Are you there? Are you ok?

Monday, June 18. 8:51AM.

That's my line in the sand. My before and after. My scene in the movie where everything goes silent. Where I go Blind. Deaf. Mute.

The phone is on the floor and so am I. 

But my daughter. My sweet, sweet daughter is there.

And she is scared. And I must be strong.

It's ok. You're ok. Mommy is ok.

It's not ok.

My mother is on her way over to keep L while I go to a routine prenatal visit.

It's not ok.

I am numb. I am in a fog. I don't know what to do.

It's not ok.

Patrick. I must tell Patrick. My mom is coming. She will know. I have to tell Patrick now. He has to be the first to know.

I had enough wherewithal to remember that he was driving with a co-worker to an out-of-town meeting. I would have to tell him on the phone. His meeting was at 9:30. I had to do it now. With the co-worker there. I had to.

It was the hardest thing I have ever done in my entire life. 

Baby. I'm sorry. I'm so so sorry. I know you are on your way to a meeting. The doctor called. The test. It was positive. Down syndrome.

I stole his breath. 

It was gone. 

It left with a barely-discernable Oh My God

And that was it.

I was back in the kitchen alone. I barely remember the next few hours. I was a mess. My mom took L. Patrick came home. I wept. I shook. I keened for the baby boy that I had lost.

Pat was so strong and so brave. I was not. I could not do it. I did not want to do it.

Never. Never once did the thought occur to me that I wouldn't have my son. Not even in my darkest hour.

But I didn't want to do it anymore. To be pregnant. To hear bad news. To carry this baby. This child that I no longer knew. That was mine but wasn't. 

He wasn't what I asked for. 

This is my fault. I did something wrong. Made a mistake. He is broken. I am broken. It is all my fault.

It's not ok.

I wanted to run away. I wanted to leave. I was so, so very bitter that I couldn't leave. Yes. Technically, I could go. I could go anywhere. 

But I literally couldn't leave him. He was attached to me. And I couldn't do anything about it.

I spent the next two weeks in a haze. We told our parents. I told my best friend. But that's it. I emailed my brothers and a few close friends to let them know. 

I couldn't talk to anyone. I refused calls. I begged my parents not to tell. 

I'd done something wrong and I would tell it when I was ready. If I was ever ready.

I would never be ready.

I did not know this child. This thing growing inside of me. Breathing all of my air while I was suffocating.

I could not imagine him. Every blue-eyed, blonde-haired boy I saw knocked me to my knees. Any boy I saw that looked like Patrick was like a punch in the face. 

Our boy. He would never be. He would never smile. Never laugh. He would never know me. Love me. He would never play football or understand baseball. He would not look like our family. He might not speak. He might not walk. He would never go to school. He would work at McDonalds. Live with us forever. 

We were trapped.


It wasn't a question. I didn't want to hear the answer. It didn't matter. I knew a thousand people and not ONE of them had a child with Down syndrome. Not one of them would have to hand their newborn over for open heart surgery. It wasn't fair. It didn't make sense. 

It's not ok. It will never be ok.

I was angry. I was tired. I was bitter. Resentful. Sad. Guilty. Confused. Scared.

And there was the heart surgery to tend to. We had to pick a hospital and a surgeon. We had to visit Boston. Confirm the diagnosis. Learn about his prognosis.

I cried every single day for seventeen straight days. Sometimes it happened at night. Sometimes it happened at random in the car. On a plane. At the park. I never knew. It would hit me like a ton of bricks. It would take the breath out of me.

But it had to end. This wasn't me. I had to pull it together. Seventeen days is a long time to be weak and despondent when you're used to being strong and determined. 

I am a fighter. I am strong. 

was a fighter. I was strong. I don't think I can do this.

I was still so angry. So tired and bitter and resentful and sad and guilty and confused and scared. 

But I had to take control back.

I wrote an email, which many of you received. It was - other than this post - the hardest thing I've ever written. 

I sent it to EVERYONE. People were going to hear the news directly from me. There was no way that people were going to sit around and Did you hear? Poor thing. Bless her heart. Can you imagine? about me and my family.

So I wrote it down.

I was so raw and vulnerable.

I spent most of my life saying whatever I thought to anyone that would listen. People had to know how I felt about things. How I felt about them. I was never good at censoring myself.

But I grew older. Fell in love. Got married. Had a child. 

I learned to be still. To listen more. To say less. (Well, sometimes.)

I surrounded myself with people I truly enjoyed. Fiercely protected the people I loved. I didn't really care about the rest.

All of a sudden, people didn't need to know whether or not I liked them. They didn't need to know what I ate for breakfast. What made me happy. What made me sad.

They didn't need to know my business. If you knew what I was doing, it's because I told you myself. 

That was how I had come to want it.

So when I pushed send on that email, I was terrified. I was letting people in. Putting my life out there. And not just a little something. Something big. Something huge. Something that could be judged. Misunderstood. Questioned.

In hindsight, it was the most freeing thing I've ever done and the first step in getting to where I am today.

But as it was, I was terrified that day.

We had gone to our family's beach house to get away from it all. 

At the beach you ride bikes. 

So I pressed send. I got on my bike. Put on my headphones and blasted Kelly Clarkson's Stronger. It had been on repeat for days. It wasn't a mantra. It was 3 minutes and 41 seconds of trying to convince myself that I could handle this. That I could be strong. That I HAD to be strong. 

Every time I put on those headphones it was 3 minutes and 41 seconds of talking myself into accepting this challenge.

I wasn't convinced. 

When I returned home, the response was overwhelming. The calls. The texts. The emails. 


The love for me. The love for Pat. The love for Elle.

But the love for that baby boy. It was there. 

I didn't need a stupid song to convince me. I needed the people that loved me to convince me. To REMIND me.

They knew what I had forgotten. 

I could do this. I could be strong. I could love this little boy.

There was one text. It was a game-changer. 

One of my oldest friends sent it to me and I know exactly where I was when I got it.

He wrote a lot of nice things, but one thing in particular stuck with me: 

If you ever doubt yourself go back and read what you wrote. It's pretty powerful.

So I did. I went back and read my email for the thousandth time. The email that explained how our baby boy would be born with a heart defect and an extra chromosome. That talked about how we were going through a difficult time, but that ultimately it didn't matter because we loved him unconditionally.

And for the second time in a few short months, I just knew. 

I knew I could do this. That I was strong enough. That this was the plan. 

That I was supposed to have this little boy just as he was.

And I knew that if I ever forgot, I could go back and read the words that I wrote. Because they were true: We were sad, but it didn't matter. He was ours and we would love him.

I never told my friend how much that text meant to me. So B, if you're reading this - thanks.

I still cried everyday, but I also started to research. To read about Down syndrome and heart defects and what it all ultimately meant. I was so wrong about so many things, and knowledge gave me power. It made me stronger.

My sister-in-law connected me with an amazing woman who is now a close friend.

She had gone through the exact same scenario one year prior. 

A beautiful baby boy. Older children. A prenatal diagnosis of AV Canal. Down syndrome. NICU. Open heart surgery. Boston Children's Hospital. Same cardiologist. Same surgeon.

She was my savior. My lifeline. I told her everything. EVERY. THING. I had never met this woman, but she knew my deepest darkest thoughts. My fears.

When I was decorating his nursery, I had a horrible thought. 

Why am I even doing this? It's not like he'll notice. He'll never play with these toys or wear these clothes. 

She was the only one I told. 

She understood. 

As I got closer and closer to my due date, I had to meet her. To meet her son.  

Patrick and I drove down to Lafayette with my brother and his wife. I was excited. Nervous. Happy. Scared.

Of course, I already knew everything about them, because I spoke to her every day, but I still wondered...

What would he be like? What would he look like in person? Would he be happy? Would he play? Would he interact with me? 

Holding that little boy was the first time it all felt ok. I held him tight and he sank into my chest and put his head on my shoulders and I just cried and cried and cried. And he let me.

He knew what I needed.

He was perfect. Adorable. Sweet. Happy. So interactive. So loving. Intuitive. A tad bit mischievous. 

He loved a little wooden pig.

He was the first little boy that saved me.

The second one would arrive four weeks later.

Reid was born Monday, September 17 at 1:12pm.  It was the first day I cried in a month - they were tears of joy.

I was so nervous to meet him. This person I knew everything but nothing about.

He came into the world and he was perfect.

6 pounds, 6 ounces. 19 3/4 inches.

He came quickly, just like his sister.

A dimple on his right cheek. Ten adorable toes. Two hands that grabbed onto mine.

He had beautiful almond eyes -- they were blue. He had soft, fuzzy hair -- it was blonde.

He was a Conley. He looked like his mommy. His daddy. Exactly like his sister.

He had her appetite, too. He was Calm. Patient. Kind. Understanding. Loving. Forgiving.

All of those things that I thought and said before he was born. I was so ashamed. I was so wrong.

He forgave me. He loved me anyway.

He was everything that I wanted. And more.

I didn't get to see him much on his birth day. He was sent to the NICU because his oxygen levels dropped and his temperature was a little low.

I could write a whole post on our NICU experience. We were only there for a week and I hated every second of it. I can't imagine how hard it must be for other families who are there for much longer and for more serious reasons. I think about those families all the time. Especially if you have other children at home. It is a very difficult situation to balance. 

A fragile baby. A toddler that doesn't understand. Recovering from birth. Pumping around the clock to coax your milk to come in. The pain when it actually does. Getting no answers about his progress or when he might be released.

I was beside myself. When I was discharged and sent home without my baby, I thought my world had been ripped in two. That night I shook the whole house with my sobs. 


This little boy, who just months earlier I wanted to run away from. My pain from finding out he had Down syndrome had NOTHING on my pain from being away from him that first night.

I had to get him home. He belonged with me. He belonged with us. He had a sister and a mommy and a daddy and we needed to be together.

The cardiologist said that his oxygen levels were fine. That the dip was normal for a baby with a heart defect. That he never needed to come to the NICU in the first place. His temperature regulated - it was low, but I learned that was completely normal in children with Down syndrome. He was taking every bottle unless we weren't there. 

He was doing well. Following directions. Being the best patient. But, they wouldn't let him leave.

In all honesty, I strongly believe that the neonatologist enjoyed having a baby with AV Canal/Down syndrome. I don't think he sees those every day.

But I refused to let my son be his guinea pig.

So I did what any self-respecting mama would do. I camped out at the NICU for the next three days and bugged the shit out of every doctor on that floor. I learned everything about his oxygen levels, feedings, heart rate, temperature. Learned the requirements to get him out of there. Gave him every feeding so that the nurses wouldn't gavage him when they were in a rush. Held him. Rocked him. Loved him. Told him to keep up the good work. That mama was gonna break him out.

I think they finally let us go home because they were so sick of me.

Whatever works.

He loved being home. He was so calm and happy. He loved to snuggle. 

But the joy of having him home soon wore thin. We had a thousand doctor's appointments. We were quarantined before his surgery; he might not survive even the smallest respiratory illness.

We had to pull L out of school a few weeks before the surgery, because we couldn't risk her bringing something home.

The months leading up to his surgery crept along.

Patrick and I were merely surviving. 

My anxiety was overwhelming. I couldn't breathe. I couldn't sleep. I was so nervous. The surgery invaded every thought. I had no outlet. I couldn't take the kids anywhere. I couldn't leave them for very long.

R was doing fine, but his breathing was heavy. He was very tired and slept most of the time.

We boarded a plane on December 4, 2012 and were off to Boston Children's Hospital, where R would have his heart fixed by the best cardiac team in the nation.

I was a mess.

All I wanted to do was hold him and love him and take pictures of him. I was terrified, but I knew how much better he would feel. How much he needed the surgery.

I was in a state of shock when I handed him over that Thursday morning. A wonderful nurse walked up to me and put her arms around me. She said, "You don't know it yet, but those tears you're crying are happy tears. Your baby needs this surgery and he is going to be FINE."

OOOOOOH. I needed that hug and I needed to hear that.

I spent the day waiting. And eating.

I was beside myself. It was like I was living a dream. I was in an alternate reality. I cried at every update. I didn't want to know what they were doing to my baby. The incisions. The bypass machine. The blood transfusions. Patrick wisely stopped telling me.

He was a champ and the surgery went as well as it could have. Seeing him in the CICU was incredibly emotional. We couldn't hold him. Comfort him.  He was out of it. Bruised and battered. Worse for the wear.

We were helpless. Exhausted. The fog would not lift. We smiled but inside we were depleted.

Once again we were surrounded by love. Our families were there through every step. They took care of us when we could not take care of ourselves. They took care of Elle when we could only take care of Reid.

Once he was out of the ICU, my dad slept next to Reid's hospital bed every night.

Some of our closest friends came. They made us laugh. They distracted us. They held our baby tight.

They loved us.

The rest of our friends and family were there in spirit. They sent cards, emails, texts, messages. Flowers, toys for Elle, balloons, food, cupcakes. Booze.

It got us through.

Reid was ok. He was going to be ok.

It will all be ok.

My little hero.

My heart baby. 

My fighter. 

Reid is six months old today. And I think the shock of the past year is just now wearing off. The fog is just now lifting. We are just now resuming a normal life.

He is the strongest person I know. He has gone through more in his half year than most people go through in a lifetime.

He smiles. He laughs. He coos. He interacts. He takes it all in. He wears all of his cute clothes. He loves his room. He loves his toys. He LOVES his mama.  

He will walk. He will talk. He will play baseball if he wants. 

Getting to this point was hard. It was a long, scary, horrible time in our lives. It's still hard. I worry about him every day. Sometimes every second of the day.

My biggest fear is that someone, somewhere, someday will make fun of him. Will call him retarded.  Will tell him that he's different. And that different is a bad thing.

I wish I could protect him from all the negative in the world. But I know that eventually he must live his own life. Carve out his own path.

I don't know what his future holds exactly, but I'll do whatever it takes to help him get there.

And I will tell him the things I do know. That he is Kind. Gentle. Loving. Caring. Understanding. Patient. I will tell him that he is perfect the way he is. That he can do anything he puts his mind to. That his daddy, sister and I will love him unconditionally. That we know how to love because of him. We know how to forgive because of him. He taught us about life. And what it means to live a life that is different than what you planned. That is so much better than what you planned.

I will tell him that he saved me from a life that I didn't even know I needed to be saved from.

I will tell him how wonderful our family is.

Patrick is my rock. His strength and stability got me through every dark hour. There is no one on this Earth whom I love more. He took my hand and led me when I was lost. He loves me completely and allows me to be me. He is the best daddy. The best husband. He calmly, lovingly and capably holds our family in his hands.

Elle is my inspiration. I am in awe of her. It is impossible for anyone to love her more. She is so determined. So smart. So independent. So full of life. So beautiful - inside and out. She wants to know the reason behind everything and doesn't seem to have a working knowledge of the word NO. She helps me see things as they are and reminds me that life is good. That we don't have to be so serious all the time. That every day can be a party if you have a good hat and some music. A boa doesn't hurt either.

And Reid. He is my answer.

All of those WHYs...

Turns out they were a question. And God gave me the best answer in this perfect little boy. 

WHY did this happen to me?

Because it was supposed to. Because that was the plan and it was a good plan. Because I needed to learn about unconditional love. And patience. About slowing down. Helping others. About celebrating the good instead of complaining about the bad. Savoring the little things and letting go of the big things. I needed to stop worrying about what other people think and focus on what is important to me and my family. I needed to put myself out there. I needed a new perspective.

But mostly, this happened to me because I am strong enough to handle it

God knew that.

I know that now. 

Because what doesn't kill you most definitely does make you stronger.

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*Many of you have told me that my comments are not working. I think I have it quasi-fixed now. If you click on the Comments link (below left), it will take you to the comment box! If you are commenting from an iPhone, it still only works sporadically. Sorry about that! 

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