Tuesday, December 17, 2013

Who I Be

I've been trying to figure out a way to explain what this whole experience has been like.

Which is difficult in and of itself, because each day is totally different. 

Different routine, different emotions, different levels of exhaustion. 

Always exhausted. Just some days more than others.

I could tell you the specifics of our situation, but it'd be kind of a boring read.

Especially since I'm in a particularly crappy mood right now and I don't want to bum you out.

But if I were to tell you about our experience, it would be all like:

We live in a 400-square foot apartment, where Elle and I share a bed and Pat sleeps on the living room floor because there has not been one night yet that both kids have managed to sleep through the night. And when one starts yelling like a banshee, the other one gets going, and honestly, I'd rather shack up with a 3-year old than deal with them yodeling back and forth in their shared room each night.

I would tell you that most of our days are spent administering medicines, changing dressings, going to the hospital, having therapies, and attempting to do all of the other normal small child things. Feeding, bathing, playing, cleaning, chasing.

It amazes me how I can slap on some blue medical gloves and administer an intravenous antibiotic like I've been doing it my whole life, but low and behold, sometimes I forget to give the kids dinner. 

This is especially true when Patrick is back in Shreveport for work, which he is starting to be more and more often.

The rest of our time is spent doing Lord knows what because Lord knows we can't do anything at all.

We are confined to our glorified dorm room day and night because Reid is not allowed in public. 

Or outside much. 

Or anywhere really, except for the most crowded place in Memphis, which happens to be St. Jude.

If I were to tell you about our experience thus far, I would complain about the fact that I left my home and my family and my friends and my dog and my bed and my freshly planted flowers in one day's time and I've yet to return.

I would go into detail about our lack of schedule or structure and how that's hard for a mama but it's really hard for a bebé. And that it causes sweet, displaced, confused little girls to ask early and often, "Mama can we please go home? I miss my family and my school and my room."

I could tell you that it's heartbreaking to say no. And that I cry every time we have to send her to my mother's because she has a little cough. And well, we just can't risk a little cough.

And who wants to hear about our days and nights in the hospital and how helpless it feels to watch Reid get hooked up to multiple IVs, where the only place he has to play is a hospital bed? And how he's such a trooper, but ultimately he gets tired and exhausted and sick from the continual discomfort of chemo?

And the fact that the only thing more elusive than a good night's sleep is a meal that doesn't consist of pizza?

And it would just make you sad if you knew how much I fear for my baby boy and his health and how guilty I feel for thinking all of those things I just wrote because, honestly and truly, his health is all that matters, and I'll live in a box if that's what it takes.

But I don't want to live in a box.

See, that's the thing. Somewhere along the line I got it in my head that I had to Be.

I had to Be smart. I had to Be pretty. I had to Be funny. I had to Be stoic. Give perfect advice. Have it all together. 

I had to Be a great mom. A perfect wife.

And then. I had to Be a special needs mom. A heart defect mom.

A Cancer Mom.

And what does all if that mean anyway? Who the hell wants to Be A Cancer Mom?

Since Reid was born, I've been realizing that I was so focused on the have-to-bes that I was never focused on the what-bes.

And when you are uninformed and oblivious to how life works, thinking ahead and trying to be perfect seems like a really grand idea. But in reality, all it does is set you up for failure. 

Because you can't plan for things like cancer. And even if you could, why would you want to? 

It wouldn't be anything like you planned anyway. 

So, it's better to Be in the present. To feel what you feel. To accept who you are at that moment.

To say, yeah, I'd live in a box on the street to help my kid, but I hope I don't have to. 

Cause that would suck. 

I constantly have to remind myself of that because in times like this I often fall into those old traps of having to Be. 

I have to remember to stop rushing around. To stop trying to Be everything to everyone, because that always ends in a disaster. 

I have to tell myself that I'm doing a good enough job. And that there's no manual on how to handle this stuff. 

Easier said than done, but sometimes I just have to remember to Be ME.

Whatever that is today. Sad, happy or anything in between. 

There are a lot of times when I'm witty and effervescent and super-duper, awesomely positive!

But lately there are equally as many times that I'm pissed off about living in a tiny ass apartment with no DirecTV.

I hate that I don't have my 
king-sized Sleep Number bed and my 9-year old pug to help me sleep at night. I especially hate that I don't have my comfy husband there to spoon.

(Look, I'm well aware that this isn't Darfur and that I should slap myself for missing a king-sized Sleep Number bed. But, I'm just being honest.)

And I really, really hate that it's the holidays and that it doesn't feel like it at all. For two years in a row.

I hate that I feel like my kids are getting swindled out of the experience even though, yeah, yeah, yeah, Christmas is about who you're with, not where you are.

I haven't even listened to one Kenny and Dolly song this year.

I hate that we are basically held hostage. That I can't think of any other situation where you are literally and unexpectedly ripped out of your home and thrown into an unfamiliar, scary situation. 

Except for jail. And listen, Pat still carries around my bail money in case I ever wind up there.

I hate that just six weeks in, a lot of the phone calls have stopped. And that I'm left to wonder if everyone is just too busy doing all of the wonderful, fun, holiday things that we don't get to do like having snowball fights or cuddling puppies by the fire or baking homemade sugar cookies while wearing really beautiful, really expensive cashmere sweaters.

Or do they just feel like they don't want to bother us because we're super busy Having Cancer?

I know it's the latter. And I know it's the thought that counts, but truthfully, not calling is way worse than "bothering" us.

But one of the things I hate most is that I feel like I can't be a good mom to both of my children right now. That I can't meet their needs properly.

Because I can't cure cancer and I can't adequately explain to a 3-year old this shitstorm of a situation we're in.

And I hate that Reid has been through hell and back during his short fifteen months of life.

But the thing I hate more than anything is that people might think of him as this sick child. A baby who, as one person said to me the other day, has been dealt a bad hand in life.

I hate a lot of things about our situation.

And I'm owning them today. 

But there has NEVER been a day that I thought my child has been dealt a bad hand in life. 

Yes. I wish that we were at home with two healthy and happy children, peacefully sleeping in their own beds. 

I wish that my mind would stay calm instead of whirring with a thousand different emotions all at once. 

Sometimes I also wish that I was tanner or taller or that I interrupted less and listened more.

A lot of times I wish that I was on the beach somewhere drinking micheladas.

And I definitely wish that I didn't have these two inches of roots growing out of my head. And God Bless Us, we could all use a haircut, even Reid, but I don't care because I'm letting him keep very single scraggly, thinning, perfect hair he has left.

I would change many a thing right now if I could.

But you know what?

Those are just things. Circumstances. Moments in time.

And they do not make Reid's life a bad deal in ANY way.

What I really wish is that everyone in the world could meet Reid. He is handling cancer like a boss.

He has more energy now than he ever has. The chemo gets him down, but then he's right back up.

(That's the thing about pediatric cancer. The kids are just being kids, while the adults are having full-blown panic attacks in the hospital bathroom.)

Reid is a perfect example of what it's like to be your imperfect self.

And there is so much beauty in that.

We are an imperfect family.

But we are us.

I am ME.

I am a wife and a mom and a friend and a daughter and a sister and sometimes I'm funny and sometimes I'm nice and sometimes I'm mean (especially every morning when I wake up) and I am most definitely never tan. And I may be stressed and tired and forget to feed my kids, but I love them. And if you ever get a pass on feeding your kids, it's probably gonna be when youre living in a 12x12 room, spending most of your days administering cancer-fighting drugs to your baby. (
And frankly, I'm the best nurse without a degree that you've ever seen.)

I may hate the situation I'm in, but I still have to figure out how to fight for my family. Even when I don't have the strength.

Even when things get tough and I forget who I am. Or I stupidly try to be someone I'm not.

Some Super Hero Cancer Mom or whatever.

We don't need to do things better. We don't always have to try and Be something or someone or somewhere. 
We don't have to pretend that we are okay with our circumstances.

We just need each other. Even if it's in the solitary confinement we now call home.

Because we're perfectly imperfect together. 

And besides, it isn't the hand youre dealt. It's how you play the game.

And we always have our game face on.

Thursday, December 5, 2013

The Road Less Traveled

After I wrote the last post, I felt a little of my bruising start to heal.

Words are cathartic for me. Expressing my feelings openly and honestly has always helped me through tough times. Although, there have been plenty of moments when I've not known how to channel my feelings properly.

Sometimes I'm like a volcano -- everything just spills out and makes a mess.

Some people cry. Some get depressed. Some ignore the problem altogether.

I get mad.

As I've gotten older, I understand better what my anger means. I understand that it's ok to feel that way, because it's just how I manifest my emotions.

But, I try deal with it in more productive ways. Like writing.

Sure, I still have a thermonuclear meltdown every now and then, but they are few and far between.

The exception being this past month. In the last four weeks, I've had temper tantrums that put Miss Elle's to shame.

She'll watch me with those wide eyes, and you can just tell she's thinking, "So THAT'S how it's done."

No sweetie, it's not. Mommy has been a bad, BAD example.

Mommy is not 3-years old. Mommy should not act like it.

Lord, sometimes I wish I was. But, no. I'm an adult and I have all of this responsibility, so that type of behavior isn't exactly sustainable.

Anyway, I spent the first few weeks here being very angry. Mad. Fighting. Talking about how unfair it all is.

But, I'm hoping I put most of that behind me. I know I'll still have my moments. I don't think you can go through something like this and not have incredibly deep emotion over it. But, I'm trying to focus my energy on what's important instead.

Patrick said something that I found to be incredibly poignant. He very kindly said to me, "If you keep focusing on the past and all that we left behind, then you'll be unable to focus on the present and all that is ahead. We have to get our son well. That is all that matters. We are still a family. We are still us. We are in this together and it doesn't matter where we are. We have a job to do it, and we can't do it without you."

Well, damn. I knew I kept him around for something. Pretty sure it's because he always keeps me in line.

So, excuse me for being a jerk. Diapers off, big girl panties on. Let's do this thing.

And here we are, Day 27.

I can't believe it's only been 27 days. It seems like a lifetime.

Tomorrow will mark the one year anniversary of Reid's open heart surgery.

I keep thinking about that day for several reasons. Mainly, because I am just so proud of my little boy and how strong he is. I wanted to have a big party on Friday night for him.

(There's always next year, right?)

But, I also keep thinking about perception and change. That's a huge theme on this blog, because that's a huge theme in my life.

Last year on this exact date, I was crippled by the idea that my 10-week old was about to have such a major operation. And that after the surgery was complete, we'd still have to tackle the Down syndrome piece.

And tackle it, we did. We knocked down all of those obstacles and kept cruising.

I honestly thought I had a my life figured out. I experienced some incredible things and learned some amazing life lessons.


I guess I had more lessons to learn.

Cause we met another roadblock on our journey.

And, I'm trying really hard to understand it all. To figure out what it is that God wants me to do in this situation.

Maybe I didn't listen hard enough last time?

Maybe I got too confident? Too comfortable with my new perspective?

Maybe I didn't get the right message?

I don't know.

And I want to know. I want so desperately to understand what this is about.

What am I missing here? What is it that I need to do?

I want to do the right thing. I want to make a difference. I want to be there for my son. I want to continue to change for the better.

I don't want to mess this up. I don't want to stall out from fear or anger.

So here's what I've come up with so far.

I don't need to know everything. I don't have to understand. I may never know what this is all about.

And that's ok.

I don't have to know the reason behind something in order to do the right thing and make a difference.

I don't have to have all of the answers all of the time. I just have to take it all in and let the lessons flow. Allow the people that I meet along this journey to make a difference in my life. I need to be still and let others teach me for once, instead of always being the one trying to teach.

When you walk the halls of St. Jude, you see some things that you can't unsee.

Very, very sick children. Tired, worn-down parents. Tears. Vomiting. Scars. Bald heads. Pale faces.


Love. Happiness. Joy.

It's all there. Sometimes you have to look past the masks and the beanie hats to see it. But it's there.

When you have a sick child, you realize that every day is a gift. That all of the stuff that you were worried about before doesn't matter anymore.

Your perspective is so completely different, because you are experiencing a very real fear. This isn't a cold. This isn't teething. This is life or death.

And there is always the unspoken pain. What if my child doesn't survive?

No one talks about that, because that's not an option. It's unfathomable. You have to put your head down and you have to push through and you have to fight.

You can't get bogged down in the what-ifs.

People always tell me I'm so strong. And that's nice. But, I'm no stronger than any other parent going through this.

People wonder how we do it.

And the answer is, you just do. It's your child. You'll do anything. Not to sound like a Nike ad, but you freaking JUST DO IT.

I learned that last year when we went on our roller coaster ride.

Maybe God does give his biggest battles to his strongest soldiers. I'm told cliches like that all the time.

But, I don't know.

I think it's more about the love that a parent has for a child. And the fact that you will do anything.

ANYTHING to take care of your babies.

I didn't know what we were in for when I became pregnant with Reid. If you would have told me my life would turn out this way, I wouldn't have believed you.

I would never have believed that it was possible to endure so much.

Reid may not be the boy that I envisioned when he was brand-new in my belly. This life may be different than the one I daydreamed about in years past.

But, I wouldn't change it. Because it is SO much more than what I imagined.

Reid is my teacher.

He is everything I want to be.

He is everything that anyone could hope to be.

He has been here a mere four weeks, and the nurses already fight over who is going to take care of him.

He will vomit because he is sick from chemo and then clap.

He will cuddle the very person that just stuck him with a needle.

He will spend his uncomfortable, sleepless nights babbling and practicing his Downward Dog.

He will refuse to eat but attempt to play.

He will wake up from anesthesia with a smile.

That doesn't mean that he likes any of this. Far from it. He gets frustrated. He cries and yells and screams. He gets mad. He gets angry. (Lord knows he comes by it naturally.)

He hurts.

But he lives his life day to day.

And Every. Single. Day.

He forgives.

He takes what they throw at him and he hits it out of the park.

So. I look at him. And I look at all of the other kids going the same thing. And I know that there is nothing in the world for me to be angry over.

Because if anyone has the right to be angry, it's them.

But there they are. Everyday. Making a choice to be happy.

They are heading down this very long, very difficult road and they are facing each battle head-on. They know that these obstacles are just that. Roadblocks on an otherwise wonderful path.

Maybe it's the Road Less Traveled, but they get what most people don't: It's not the destination. It's how you navigate your journey that matters.

So, I'm going to try to navigate mine accordingly. I may crash and burn along the way. But if I follow Reid's lead, I know I'll make it to the finish line.

Friday, November 29, 2013


When I wrote The Story of Us, part of me truly believed that would be our Big Story.

The tale we were supposed to tell for the rest of our days.

Our version of We Came, We Saw, We Conquered. Our pièce de résistance.

Our Magnum opus.

I don't know. I can't say that I was totally naive. I didn't necessarily ascribe to the idea that we'd put in our time, so we were now immune to experiencing another of life's many surprises.

But I can't say that I expected this.

Another moment frozen in time. Another before and after. Bad news.

Words coming in bits and pieces. One word standing out against the rest.


It's all still a little foggy.

Three weeks ago today, I took our baby boy into the pediatrician because I felt like something was "off."

Maybe it was an ear infection. Maybe it was the tubes he had placed in his eyes, I couldn't say.

I almost didn't take him, because maybe he was just teething. We had recently taken his bottle away and he was having a little separation anxiety.

It could be anything.

Anything but Cancer.

I could spend a lot of time writing about the specifics of that day, but I'm not quite there yet. I haven't yet wrapped my head around it all.

In fact, I'm not really sure what I'm supposed to be writing here.

All I know is that writing makes me feel better.

And I need something to make me feel better.

I have been a whisper of myself for the past three weeks, and I need to remember who I am. I need to find that mama bear and break out of my funk and warrior on for my son. For my daughter and for my husband.

I need to stop focusing on the what was and focus on the what is.

Which is this:

Reid has leukemia.

And he is going to beat it.

Before I took him to the doctor, I was concerned about some bruising and a few broken blood vessels called petechia.

Reid has always had low platelet counts, and we often do a CBC to check his numbers.

Because of the bruising, we decided to do a CBC while we were at the pediatrician's office.

His platelets were abnormally low, and the doctor was very concerned.  She asked me to call someone to pick up Elle from school, because we needed to see the hematologist right away.

That afternoon was a blur, but let's just say Reid never went home again.

He was admitted into LSUMC that night and an ambulance from St. Jude picked him up the very next morning.

Patrick rode to Memphis in the ambulance, and my dad drove me up in my car.

We have been here ever since.

Reid's type of leukemia is called Acute Myeloid Leukemia, or AML for short.  It is rare -- only about 500 people are diagnosed with AML each year.

Do yourself a favor and don't Google it.

AML is more aggressive than the more common type of leukemia, which is called ALL.

Because of this, his treatment will be more aggressive. Although it will be more concise, lasting over a period of 6-8 months instead of years.

He started treatment as soon as his diagnosis was confirmed by St. Jude.

His protocol consists of six back-to-back courses that go like this:

4-7 days of inpatient chemotherapy. He had a double lumen central venous catheter (say that three times fast) surgically insterted into his chest, which is how he receives his two intravenous chemos. They run 24-hours a day for the entire week of treatment.

He also receives an oral chemotherapy.

They found leukemia in his spinal fluid, which is called CNS Disease. They treat that by inserting chemo directly into his spine during a spinal tap procedure. The good news is that they didn't see any leukemia cells after the two initial spinal tap treatments, and they plan to only have to administer one more round.

Once chemotherapy is completed, he is moved to outpatient to recover.

During that time, he still goes to the hospital every day for blood draws, check-ups, regular platelet and blood transfusions, spinal taps and more. He also receives physical, occupational and speech therapy.

While he is in this recovery period, his has no immunity. He is what's called neutropenic and very susceptible to infection. He must wear a mask. Avoid crowds. He can't go out into public. He can't risk illness.

It is very literally a matter of life and death.

He is on 13 prescription medications to manage his pain and fight off infection.

Most are twice a day. Some are as needed. One is Monday, Tuesday, Wednesday only.

Some go with food. One must be on an empty stomach. As in no food for two hours before and one hour after. This includes milk. At twice a day, that's six full hours he can't eat or drink. Which is proving to be problematic, since brother can't tell time.

We have to administer certain medications through his catheter. We have to clean and flush the lines each day.

Change his dressing every other day.

Change the claves on Fridays. What the hell is a clave, anyway?

Pat and I will have unofficial nursing degrees after all is said and done. And my iPhone will probably explode from all of the alarms I have set.

Once his numbers start to go back up, he is immediately admitted inpatient to start the next round of chemotherapy.

And so the story goes -- six times around.

So, that's the logistics. But, I know you want the real story.

How is he? How are we?

And of course, what's his prognosis?

Well, the very good news is this: His prognosis is excellent.

The overall prognosis for AML is not good. It's very sad, actually. That's why I told you not to Google it.

One exception to that; however, is children with Down syndrome.

For reasons unknown, people with Down syndrome are unfortunately more at-risk for leukemia. His oncologists tell us that Down syndrome is actually the indirect cause of his cancer.

But here's the ironic part. For reasons also unknown, children with Down syndrome tend to do very well with treatment and come through with flying colors.

SO, basically, the Down syndrome is the reason he has cancer, but it's also the reason he'll beat this thing.

WTF, right?

But, Reid continues to amaze me.

He has always been (and will always be) my hero. He is the strongest person I know and such a trooper.

Chemo was really tough on him - we were inpatient for 12 very long days and he was incredibly, violently sick.

He couldn't eat or sleep or do much of anything at all.

Before his diagnosis, he was crawling and pulling up and getting into everything.

After his first round of chemo, he couldn't even sit up and he constantly battled fevers, nausea, and rashes.

They drew blood more than 21 times in two days. Reid's veins are notoriously hard to access, and they beat him to hell trying to get a line. They even tried once in his head, which mama would have NEVER allowed, but I was downstairs when they did it. (That didn't stop me from going postal after-the-fact, though. Let's just say they will never make that mistake again.)

He is now two weeks post-chemo and doing so much better. He's feeling pretty good most days and almost back to his old self. He's having a few side effects -- mouth sores, trouble sleeping (as in HE DOES NOT SLEEP), no appetite, itchiness, some vomiting -- and he seems uncomfortable at times, but overall, he's my loving, happy, smiling boy.

We will unfortunately start the entire process over in another week or so.

Speaking of smiling and happy, Elle has been such a trooper. She has been so helpful and sweet, but the transition has been hard on her. This literally happened overnight - I dropped her off at school on a Friday morning and I only saw her once more to say goodbye. We left home very abruptly and she stayed with my parents for almost two weeks, which was incredibly difficult. She didn't understand where we were or why Reid was sick. She wanted to know if she had leukemia, too.

And then, we pulled her out of school. Out of dance. Out of her home. Her bed.

She had to leave her friends and her dog and her toys.

She came up here and she all of a sudden has a new place to live, a new city, a new school. A totally new life.

But, she's handling it with such grace and charm.

Patrick has been amazing, too. He is so sweet and loving and calm and takes great care of us, just like always.

He is our rock and has enough strength for all of us.

Mama on the other hand?

I'm a little more pissed off about things.  I've been feeling really sorry for myself these past few weeks.

I'm exhausted, grumpy and rude. I'm lamenting my old life and cursing the new.

And I find that I can't even properly process the whole reason we're here.


That part. I just can't deal.

I can't think about it too much, because I will break. I cannot focus on what is going on inside his precious little body - I just have to take care of him. Go through the steps and make sure he receives the best treatment.

I have to be his mama - hold him tight and trust that he will get through this.

That he will fight this.

It's all been such a blow to my senses. I have a million questions that I know I may never get answers to.

Why did this happen?

How is this real?

What are we going to do?

Where is our old life?

When is it coming back?

Why this innocent, precious baby?

Why us?

Let's be honest, I've been on a downward spiral.

I yelled at the valet the other day.

I believe it was something along the lines of, "I hate this place!" (I may or may not have also thrown the stroller for dramatic effect.) Which, is so untrue -  St. Jude is pretty much like heaven on Earth with all of these saints walking around curing cancer.

It's just been hard to focus on the good.

We all know I'm a fighter - I am fiercely loyal and I will fight to the death for the people I love.

But it turns out that I am literally a FIGHTER.

And that's not always a good thing because I am fighting this. I am really struggling against these chains and trying hard to break them and it's not working.

I am running directly into a hurricane and expecting to come out alive.

It's one thing to fight for something. And another thing to fight against it entirely.

So I need to switch gears. Accept that my son has cancer and that we are here and that everything is different. I need to pray really hard and trust that he's going to be okay.

That we will all be okay.

I need to focus my attention on a different fight - on kicking cancer's ass and getting my baby back home where he belongs.

I've been listening to a lot of Katy Perry, which helps.

(Apparently, I turn into a 13-year old girl when faced with adversity. Kelly Clarkson got me through the Down syndrome and heart diagnosis. Katy's gonna get me through this.)

I can feel it in my bones. I'm close to making the switch.

Here's how it works:

Get knocked down.
Wallow around for a while and feel sorry for myself.
Get up.
Dust myself off.
Go get the motherfucker that knocked me down in the first place.

I'm currently in the Get Up phase. It's just taking me a little longer than usual.

I'm getting my strength back day by day, so Cancer watch out.

We are coming for you.

And we are REIDSTRONG.

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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