Wednesday, May 16, 2012

To Pretend

I'm so good at it - looking calm and placid while the waters underneath my skin churn with self doubt and mind numbing anxiety. I suppose if you practise anything enough it will become second nature. Before my world was broken down, dismantled and rebuilt for the better, I was seen by a few psychiatrists who labelled me with a "Social Anxiety Disorder". I was, without a doubt, my own worst enemy. The one thing I feared the most was the idea that people might judge me as harshly as I judged myself.

I have gone through a lot of things in my life that added to my obsessive self-hatred, but not one of those things were ever greater or more traumatic than the belief that other people's opinions - real or imagined - mattered. I was wholly and hopelessly lost within my own tortured prison. But eighteen months ago I was handed the key to my cell, redemption and freedom were within my grasp. I turned the key and set the tumblers free in the lock. I gently pushed the door open and stepped into the light.

I'm sure you're asking how a few short months can change years of repetitive and brutal self-flagellating?

Eighteen months ago my youngest baby was born. Everything was normal until it wasn't; and I was surprised to discover that although my life had crumbled down around me, I hadn't. I was still standing - shocked, shaken, terrified - but somehow still upright.

When we had our second appointment with my son's cardiologist and he asked me what I remembered from the emergency visit, I responded, "Just that he has two holes in his heart. Two small Ventricular Septal Defects."

The doctor corrected me, "I'm sorry, but that's not entirely accurate. There's more holes than that. He has multiple Ventricular Septal Defects".

I was too stunned to speak and thoroughly confused. In the Emergency Room the doctor had drawn me a diagram; a diagram with two holes on it. Now he was telling me that the original diagnosis was wrong. I didn't think I had it in me to shoulder one more piece of bad news. These holes had caused my son's body to retain a pound of fluid and forced him into congestive heart failure. This damned defect had turned our entire world upside down...

My husband voiced the question that hung vulgarly in front of us, "How many holes does he have?"

The cardiologist cleared his throat and said, "Well it doesn't really matter to the diagnosis - the number doesn't change anything"

Of course it fucking matters, I thought.

"What I'm trying to say is that his prognosis doesn't change...it's actually hard to get a number in these kind of cases..."

The room grew still and I did my best to will away the dread. Finally the doctor answered, "There are so many holes that we simply can't count them".

I gasped as though he'd struck me. 

In every person's life there is a before and an after. A pivotal turning point - an event so awful or awe inspiring - that it changes us. I'm lucky enough to know the exact moment when I became everything I thought I wasn't capable of.

I knew I had to be my son's voice - his advocate. I asked all the right questions and went toe to toe with doctors. I researched endlessly and read every medical journal I could get my hands on. I made contacts throughout the online community for "Heart Moms" and I never hesitated out of fear of judgement again. There were no stupid questions, no ridiculous assumptions, and no opinion that mattered to me that didn't come directly from a doctor's mouth.

For once in my life I believed that I was enough because I had to be. I stopped being scared of everything that didn't matter.That's not to say I wasn't terrified. I was. I feared losing my son, but to me that was the only fear that was valid anymore, the rest was just noise.

I ran myself ragged in those first few months - administering his medicine, counting his breaths per minute, attending weekly doctors appointments. I did whatever I had to in order to keep him alive; but it's what he did for me that's truly miraculous...

He made it so that I no longer have to pretend.

video
Preston, 18 mos.
All holes have grown over but two
His next cardiology appointment is in November.
The doctors say he should never need open heart surgery.


Gabe - age 4, Preston - age 18 mos, Edie - age 3 (in June)

read to be read at yeahwrite.me

45 comments:

Lynnjefferson said...

I am glad you don't have to pretend anymore. Life has truly given you a gift in this little boy and his brother and sister.

Mom

Vivian said...

Well done Carrie.

carrie said...

Thank you both! :D

Stephanie said...

<3 Beautifully written. I'm so happy that your boy is healthy now.

carrie said...

Me too!! The best thing that's ever happened to me - hands down - was when we got the news he wouldn't need surgery!

Pish Posh said...

Whoa! You are heroic! And inspiring! I have a brother with a life threatening disorder. He's 18 now and every day is a blessing.

You wrote this tribute beautifully and it moved me!

carrie said...

Thanks so much! Your words are a huge compliment. You and Stephanie are some of my favourite bloggers.

<3

Stephanie B. @B4Steph said...

Wow, that was beautifully written. Very moving post. Your tone is strong, calm, assured. I'm so glad the outcome was positive. I was on the edge of my chair, hoping... Wonderful.

carrie said...

Thank you B4 Steph. Your compliment means so much to me :)And that boy of mine - what a sweetie.

carrie said...

Oh and to Pish Posh. I'm sorry to hear about your brother, but every day we gain here is most definitely a gift. It's a beautiful, wonderful gift. :)

jenniferworrell said...

If it's okay with you, I'm going to sit here in quiet awe for a minute...I love Sunday morning miracles!

carrie said...

not a problem at all Jennifer. :)

I sit in awe of the miracle we were given nearly everyday! :D

Amanda said...

Oh my goodness this post was a roller coaster ride! I am in tears.

I am so happy your little one is doing better. I simply cannot imagine what that would be like.

I really related to the beginning part though. I have an anxiety disorder myself, and people just don't understand how much they can impact every moment of your day.

I'm glad you were able to find your way out. I always think our children do more for us than we could ever do for them.

carrie said...

Oh Amanda I'm sorry you can relate. Anxiety is such a bitch! It came very close to destroying my life a few times. I was an avoider. Anything that scared me I did my best to avoid. I flunked out of college, got a job as a chambermaid but threw up every morning before work. If it wasn't for my husband and my kids I'm not sure where I would be now.

<3

Thanks for reading :)

Gia said...

Ughh, how terrfiying! I'm so glad to hear he's doing well now...

Delilah Love said...

I've been there with my son. He doesn't have heart problems but he has many other special needs. It's amazing how the mama bear comes out and we become advocates for our children, isn't it? Good job mama! I'm glad he's doing so well now.

Vanessa said...

Being a parent is such a validating experience. I know I found myself through my own eyes instead of the eyes of others when I became a mother. I am so glad to hear that your son is doing well.

Joe said...

As I was reading you post, my stomach sank. It appeared as if the story was going to end well. I'm glad appearances can be deceiving.

carrie said...

@Gia - he is doing remarkably well now. He's such a trooper

@Delilah - it is amazing what parents will do, what they will overcome to protect their children.

@Vanessa- this is so true. being a parent makes you realize that the way your kids see you, is truly the only thing that matters. All I want is to be a good mother.

@Joe- that was my thoughts too when he was little - that this wasn't going to end well. And then somehow things turned around and we escaped not only with his life but also without needing open heart surgery!!

Alison@Mama Wants This said...

Wonderful post Carrie. I'm so glad Preston is better - he looks like a tough one!

Reanna said...

Thank-you, Carrie, for sharing such a personal and emotional story. Your strength and determination are remarkable. There aren't very many blog posts that make me cry, but you've made me feel both your joy and your pain.

I have no parenting experience or skills, but I think Preston, Gabe, and Edie are pretty damn lucky to have you in their corner.

Anonymous said...

Wow. This post moved me on so many levels. I am so proud and impressed of you in your own personal journey and then even more so by the gift you gave your son in advocacy and his gift to you. Wow. Wow. Wow. Erin

Kathy Kramer said...

It's a truly amazing moment in our lives when it truly hits us that we are stronger than we ever realized. I'm glad that your son is doing well.

carrie said...

Alison- he is tough. being the youngest sure did prepare him for that lol. And omg he is so crazy smart. :)

Reanna- Aww you made me all teary eyed by saying that. Thank you so much!

Erin- Thank you. The journey has been (and I hope will be) the most trying one of my life. It is one that I look on now as a journey that showed me what the true importance in life is and it set me free. I'd never want to go through it again lol. But it was worth it.

Kathy-it really is. I didn't know it then of course, I was too close to it all. but one year out I have a better vantage point and I suddenly realized I'm not afraid of anything anymore - least of all what others think. I guess facing your worst fear will do that. :)

Michelle Longo said...

Love the "Don't touch the camera" at the end of the video :) It is amazing how difficult times can change us into the people we are meant to be. I'm sorry for your struggles, I'm happy that it was freeing for you. Glad to also hear your son is doing well now.

Your Doctor's Wife said...

It's amazing how, as a parent, you find the strength you need for your children. It's amazing.

So glad to hear your son is doing so well.

carrie said...

@Michelle - Hehe, he was pretty dirty. lol. I'm glad too that this struggle granted me something in return. But truly it would have been worth it anyway - seeing a miracle is pretty amzing and I feel everyday that's what we were granted.

@Your Doctors wife - it is amazing and such a gift of parenthood to rise above your percieved struggles to be what you need to be for your child :)

Dawn Beronilla said...

Oh Carrie, you told the story so well. It is so amazing what we can do as parents. Your strength is inspiring, and I am so happy that your little fella is doing so much better now.

Dude of The House said...

This made me think of the stories you hear about a mother who lifted a car that was on top of her child. Sometimes we acquire super-human strength when need be. It certainly sounds as though you did in this situation. So glad that he is improving...

carrie said...

Thank your Dawn. Some days I felt far from strong and was surprised that I was still making heads or tails of my life. But slowly I stepped out of the dark and now life is just so different. Beautiful and stark.

carrie said...

Thank you Dude of the House-In the moment it was mostly instinct. I still got the familiar butterflies when I had to make an unexpected call to the pediatrician or the cardiologist but I never hesitated and I didn't run. Which was my usual MO. I guess thats the strength in a parents love. Turns out you will do anything for your kids even overcome long held anxieties. :)

Wily Guy said...

Incredible story bothe of heart and character.

WG

carrie said...

Thank you, Wily Guy. :)

Mondays with Mac said...

He is so precious. Thank-you for sharing!

Shan said...

Yes, what Michelle Longo said. So glad he is doing well.

carrie said...

@Monwithmac and @Shan - Thank you!! :)He is a cutie! lol.

Susan said...

so, so glad that he's doing so well. you're the kind of mom i hope i can be when the time comes to advocate for my children. best to your beautiful family!

Heather said...

This is a great post, Carrie. I really understand How your world view shifts after something like that. Our firstborn had a stroke before he was born and it ate a big hole in his brain in the part of the cerebellum that controls balance. He couldn't sit up until after his first birthday and didn't walk until almost 2 and a half. The doctors still aren't sure if this is something that will happen again. It's life altering. And priority-altering.

momentsofexhilaration.com said...

I haven't had to deal with anything as traumatic as this in the 18 months since my daughter was born... yet I still know exactly what you mean. Having a child made me whole and confident in a way I never was before. It took my outside myself and gave me the courage to fight for something that matters. Great post!

carrie said...

@Susan. Thank you so much for the lovely compliment. I can gurantee you that you will be stronger than you can imagine for you children. Stronger than you've ever been. A mother's love is immeasurable and it will carry you through good times and bad. Trust in that. :)

@Heather - I am so sorry to hear about your son. Such a devestating event to have to overcome and what a shadow to live beneath. Life is no doubt full of stress and worry but also a stark understanding of what is important. During my journey I found a blog and a woman said that since her son was diagnosed she learned the importance of living in the moment - not living for the milestone. Such truth in those words and I hope you have so many beautiful, wonderful, and sweet moments with your precious little guy.

carrie said...

@momentsofexhilaration- Motherhood is such a beautiful gift and such a wonderful way to renew faith in yourself!

mannahattamamma.com said...

our children force us to find reserves of power we would never have known we had. It's one of the unexpected gifts of parenthood. I'm glad he's okay now - that's wonderful.

carrie said...

Thank you :) I'm glad too!

Adrienne said...

You're a fighter! I loved post! When our babies need us, we can do anything and BE ANYBODY! I'm glad your baby boy is doing well, and helping you find the awesome person you are!!

carrie said...

Thank you so much Adrienne! It's truly remarkable the person you become after having children. It's a difficult but beautiful transition.