Inside Out

Today’s guest post comes from Stephanie who shares how her priorities have changed since the birth of her daughter with a heart defect.

 

SweetAngelMaggie (1)

I used to really care about elections and politics.  As a political fundraiser, I took it personally if friends or even strangers supported my opponent.  Funny thing is, they were never MY opponent, they were the person running against the person who paid me to help them raise enough money to compete and hopefully win an election.  I jumped from campaign to campaign, always eager to fight and argue and sometimes sacrifice relationships with friends and family members.  Nothing was more important than my job, my reputation and the campaign I happened to be working on.

I worked for a sitting governor during my entire pregnancy in 2011.  I sat in an attic office, talking and complaining and making sure that everything I touched went well.  I raised a lot of money and watched my feet and ankles swell as I paced around at fundraising events.  I took pictures of my “kankles” afterward.

Our daughter was born on January 11, 2012; she was pink and screaming with a shock of dark hair.  I did not enjoy pregnancy one bit so I was so relieved she was here and I could eat a big dinner.

During the first exam, after the first bath, probably while I was begging for a dinner menu, the nurse said, “She has a heart murmur….But lots of babies do and usually it’s nothing, most close on their own.  No big deal.  The pediatrician will listen and I am sure it will all be fine.”  I shrugged and said OK, never once thinking there was anything wrong.  Her heartbeat had been so strong the whole time I was pregnant and I had such a tough nine months – I was sure nothing was wrong.

The next day, the pediatrician examined Maggie and commented that her murmur was a “3 on a 1 to 6 scale.”  He ordered an echo, just to figure out what was going on.  I will never forget my mom piping up from across the room, “Her sister had Tetralogy of Fallot!”

Tetralogy of Fallot sounds like gibberish if you’ve never heard it.

I never knew my sister’s defect had a name.

I thought she just had a hole in her heart that they fixed.

The doctor paused upon hearing my mom’s comment and I don’t really remember much other than taking a shower and talking to my sister about child birth while the techs did an echo on my baby, down the hall.  My husband and mom walked with her, I wasn’t overly interested because I just knew nothing was wrong.  I walked over and looked in the window while they did it but I just couldn’t bring myself to get upset.

Later that afternoon, around 5:15 or so, my husband and I were in our room with our new baby.  For some reason she and I were skin to skin, maybe we had just finished nursing, when the pediatrician came in the room.

I only remember him walking in and around to the bed where we were sitting.

I do not remember what he said but as he said it, I felt my soul turn inside out.  There is no other way to describe it.

I have never been the same.

The love I feel for my child is beyond comprehension.  I have been more scared than any parent should ever have to be.  I felt something deep inside me rip open.

I have never been the same.

Now, 28 months later, Maggie has had 2 heart surgeries and is functioning normally.  You would never, ever know she had heart issues.  She goes to Montessori school, jumps and runs everywhere and loves her Daddy.  She loves me too, but it’s a different kind of love.

I am back working in politics but I don’t care the way I used to.  I care about Maggie and my husband and our family but that’s about it.  I care about helping other heart baby families know they are not alone and I have such deep empathy for parents of children with any kind of issue.

Politics is fun but I am just so blessed and thankful that my baby is OK.  I am not the same as before Maggie’s diagnosis and I think that’s a good thing.

 

Stephanie Dorko Austin began her career working for former White House Chief of Staff Erskine Bowles both times he ran for U.S. Senate (2002 and 2004).  She was Finance Director for State Treasurer Richard Moore’s gubernatorial campaign in 2008, helping to raise just over $5M for the primary election.   During the 2010 cycle, she worked for U.S. Senate candidate Cal Cunningham and N.C. Senate Majority Leader Martin Nesbitt.  She was Deputy Finance Director for Governor Bev Perdue’s re-election campaign in 2011.  She has also worked as a fundraiser for State Treasurer Janet Cowell and U.S. Senator Chris Dodd of Connecticut.

Stephanie’s non-profit experience includes serving as Vice President of Government Affairs for the Charlotte Chamber of Commerce and Development Director at the Council for Entrepreneurial Development and the NC Advocates for Justice.  

She currently works for the Cooper for North Carolina Committee and serves on the Board of Advisors of the Jamie Kirk Hahn Foundation and the Board of Trustees of Follow the Child Montessori School.  A Phi Beta Kappa graduate of Trinity College in Washington, DC, Stephanie and her husband, Will, live in Raleigh, NC.

50 States, 50 Stories Campaign

50 Stories 50 States

6/23/14 Update:  We now have ONLY 9 STATES LEFT!!!

We are still seeking stories from: Delaware, Hawaii, Maine, Montana, Nevada, Oregon, Utah, Vermont and Wyoming.

 

50 Stories 50 States

Share your story, now!
The Challenge is on!!

We are uniting our voices to fight for more data, more research and better transparency of quality information in order to Conquer Congenital Heart Disease.

The goal: to send every single Senator a personal story about CHD, along with information highlighting our serious concerns about data, research and quality.

In order to do this, we have launched the 50 States, 50 Stories Campaign. By August 1st, we need stories from all 50 states.  More than one story from a state?  No problem, we’ll use them all in one way or another!

Share your story, now!

We need you:

You’ve told your story to friends and family.  Perhaps you’ve even told your story on FB.  It can be very intimidating to share your story on a larger platform.  But, think of the huge difference it will make. Share your story on our website: Simply click here! We will do the rest.  We will contact you to let you know that we got your story and talk about different ways we can use the story.  We will edit the story and send it along to your lawmakers.  You will have input every step of the way. Add as much or as little identifying information as you would like.  Some people like to use their first and last name, others just a first name.  Some like to include pictures, others do not.  Do whatever you feel most comfortable with.

Share your story and make a difference today!!

Telling your story: healing, inspiring

Stories bring healing:

I was talking with someone yesterday how Facebook is such a great opportunity for people to connect with each other and talk about CHD.  One of my favorite parts about these groups are when someone introduces themselves, briefly shares about their child and sometimes includes a picture.  It opens the door for a bit of vulnerability and a whole lot of healing.

One mom posted this quote, and I couldn’t agree more:

story quote 1

 

Stories also bring meaningful change:

There is an urgent need in the CHD community.  A need for more data, more research, and quality standards.  Here at PCHA, these are our top priorities.  But, we can only do so much on our own.  We need you.  We need you to tell your story.

Your story is a very powerful tool.  It is easy for lawmakers and doctors to get caught up in the numbers or ignore them all together.  We need to work together and put a face to these problems.

Sharing your story is safe and easy.

We’ll do the hard work.  Share your story here.  That’s it. We’ll contact you to talk more about how we can use this story.  We can post it on our blog to inspire others.  We can include it when we connect with lawmakers in your state.  We won’t do anything without your permission first.

50 Stories in 50 States

Can you imagine the impact we could have if we could send every single Senator a personal story about CHD?  In order to do this, we have launched the 50 States, 50 Stories Campaign.  By August 1st, we hope to have collected stories from all 50 states.  More than one story from a state?  No problem, we’ll use them all, one way or another!!! Read more…

Share your story, today!

50 Stories 50 States

Rain Showers, Rainbows

kieran in the rain

Today’s guest post is from Margaret, mom to Kieran, where she describes her struggle to overcome the conflict between reality and her spiritual faith.  PCHA does not endorse any specific faith or religion.  Whatever your beliefs may be, hopefully you can relate to the resolution this mother finds in appreciating the hope and comfort she finds in her faith.

It was an April Monday, the day after Easter.

My son pulled on his red rubber rain boots and raced to the door.

“Mom, can I have the colorful umbrella?’” he asked me excitedly.

Even though it was still raining outside, we put our umbrellas up and went for a spring walk. At 5 ½ years old, there’s little my son likes to do better than take a walk in the rain as if he’s a born romantic, a natural Paris-in-the-rain type of guy. He carries an umbrella only because I require it–otherwise he loves getting soaked to the bone. I can picture him in London, getting drenched but saying, “just a drizzle!” As I watched Kieran hopping through puddles and saving worms from the well-trafficked driveway to our building, his rainbow-colored umbrella twirling against the darkened sky, my thoughts rewound back through time to an Easter 6 years ago now, when my husband and I had just found out our son was going to be born with HLHS. I won’t recap that story here, but you can read more about HLHS and our first years here.

A lot has changed since the difficult Easter weekend of 6 years ago, when my husband and I got the news at the end of the day on Good Friday, and spent a scared weekend trying to learn about a diagnosis we never even knew existed until the day before–and our baby had it. Church that Sunday was difficult and traumatic for me, and in hindsight, I probably shouldn’t have gone–instead of finding comfort in the message of resurrection and renewal, all I could fixate on were the frightening parts about a man who was said to have been born to die and his grieving mother. I was so stuck in my own shock, hurt, and terror that the promises of my faith and family and friends were all but lost on me. I had yet to believe that “God isn’t in the event, but in the response, in the care and love one receives.”

In retrospect, change is always happening when we experience new life events, even if we don’t notice the tectonic shifts beneath our feet at the time. Sometimes only looking back allows us to see how fleeting those times in life really were. I believe we, as humans, associate the ephemeral with beauty and innocence, and that is what allows us to appreciate the brief blaze of fall colors, the fleeting bloom of early spring flowers, the graceful visit of a hummingbird at our window, the short but blessed lives of butterflies, and the exuberance of early childhood. We associate a burst of joy and energy with such things because we assume such a finite timespan inspires–even requires–an enjoyment of life to the fullest.

There are many possible happy endings to any story. The happy ending I deeply wish for is that a cure for HLHS and all other congenital heart defects would magically appear and our children would be promised long, healthy lives free of such formidable conditions. But as time went on, I realized that isn’t the only possible happy outcome of this story.

My son teaches me to appreciate not just the rainbows in life, but the rain showers. And isn’t one born from the other, anyway? I don’t like getting wet; he sees joy and play in a rainy afternoon. Kieran reminds me that from hard times, change occurs and new life is born. He reminds me to treasure the fleeting moments, the ephemeral beauty of his childhood, and to notice the temporary joys given to each one of us on this earth. When I have moments of fear, worry, even terror, I remind myself to focus on enjoying the time we have together to the fullest.

Now, finally, Easter holds wonderful meaning for me again. Instead of being blinded by hurt and trauma, I can hold most close and dear the wonderful promises of comfort, of renewal, and of the eternal significance one person’s life can be, no matter how fleeting our time spent here is.

Margaret King bioMargaret King is a stay at home mom who loves spending time with her family, avidly reading, community gardening, traveling, and exploring the outdoors.  She is currently working on a young adult fiction series and enjoys flash fiction and science fiction writing as well.  Margaret has worked in the past teaching English abroad in Nepal and Mongolia, which she counts among the best experiences of her life, along with her heart family journey which she is so happy to share with our readers. Read more about Kieran’s story, here.