HLHS Dad goes to Washington D.C.; Part 2

Chris Perez attended the Congenital Heart Legislative Conference on February 25-26, 2015.  Here, he writes about the first day of this adventure. As the father of a child with a serious congenital heart defect, Chris regularly writes about his experiences in the CHD world on his blog: Half Heart. Whole Life.

Read the first part of his story here.

Day 2 of the Congenital Heart Legislative Conference was definitely an early start.  We were supposed to report for breakfast starting at 6:45am and that meant an early wake up time and packing up so I can get checked out of the hotel.  Luckily for me I usually get up at 5:45am for work, so it wasn’t a big deal…plus you can’t beat the commute of simply riding an elevator downstairs.  I got all my stuff together, including my bowtie swag (I gotta look fresh to death) and was ready to head to Capitol Hill:

CapitolHill1

After a good breakfast we were grouped up by state: there were a total of 5 of us from the great state of North Carolina.  We were given a list of the legislators we were scheduled to meet with.  My list had Congressman Richard Hudson, Senator Thom Tillis, and Senator Richard Burr.  The good news was that several members of our group were scheduled to meet with different people and most of us had the time to go together to these meetings, so I had a total of 5 meetings that day.  Of course, it would be an interesting day if we didn’t have some interesting weather: it was snowing in DC and Government was supposedly on a 2-hour delay (delayed government?  what?), but supposedly all of our meeting times were being kept.

So off we went into the tundra (it wasn’t that bad) and set out for our first meeting of the day:

CapitolHill2

Congresswoman Alma Adams

Congresswoman Adams represents the 12th District in NC, which includes Charlotte and parts of Greensboro.  We actually arrived to the office at the same time she did and she was very nice about greeting us.  As we waited I was really nervous about getting the day kicked off because I really didn’t know how these legislators would respond to our requests.  In a small way I thought it would go something like this:

jj-jameson CHD

Luckily, it did not.  Ms. Adams invited us all into her office.  She listened to our stories, asked some good questions, and was really patient with us.  She applauded us for coming out, in this weather, to share our story…and that it was so impactful because we’re parents and not paid lobbyists.  After spending time in training hearing that we might not get more than 5 minutes total, I think we must’ve spent at least 20 minutes with Congresswoman Adams.  At the end of our meeting I gave her the card with Nolan’s pictures on them and she smiled as she looked at it and said “Well hello there, Nolan. Aren’t you handsome?”  It came with such a genuine kindness and I think we couldn’t have kicked off our day with a better experience, especially for us first timers.  I know these legislators are busy and I expected to meet mostly with staffers (which is ok) but it was nice that Ms. Adams gave us a moment at the start of her day.

The fun doesn’t stop there, read the entire post here.

 

Finding Hope in Washington D.C.

Tori is  mom to 6 amazing children. 1 grown daughter and 5 boys. 4 are here on Earth and 1 is forever 13 months old and watching over us from heaven. You can read more about her journey on her blog: Finding Hope without Sterling. She has been a tremendous advocate for the Pediatric Congenital Heart Association.  Here, she tells us about her first trip to Washington D.C. to advocate.

SterlingI had the most amazing experience last week while in Washington, D.C. for the Congenital Heart Legislative Conference. I met so many wonderful people who share my passion for CHD advocacy. I was able to help out a little behind the scenes and even check in many of the participants. I learned so much and am still processing it all.

We were there to meet with our legislators and ask them to support NIH research to prevent, treat and cure CHD. For $10 million in CDC funding for data collection and public health research. And for $250 million in funding for the Department of Defense Peer Reviewed Medical Research Program. We would like them to take action by signing the Congenital Heart “Dear Colleague” letter. To join the Congressional Congenital Heart Caucus. And to submit a Congenital Heart Appropriations Request.

If you don’t understand the last paragraph, no worries. I had it explained to me and still had a hard time remembering it all. The important thing to know is that this is to support funding for research and for data collection. Research to help those we know have CHD’s treatment and hopefully one day a cure and to better detect those we don’t know have them, like Sterling. Our kids with CHD’s are becoming adults with CHD’s (which is a testament to the research already done!) and there just isn’t a whole lot of data out there for treating them.  There also aren’t very many doctors with experience in treating them. These things need to change. Supporting the above will help change that.

I was very honored to meet with our representatives and our senators and to share our stories. In my group we had 2 parents whose babies died from CHD’s, one knew of the CHD and I of course did not. Then we had 3 adult CHD patients and 1 friend of a patient. I was so nervous but they helped me out and I soon discovered that our stories are powerful. Watching the staff members come out with smiles and looks of “lets get this meeting done” turn to sadness and taking the time to ask questions and really try to understand what we were asking for and why it was so important.

Read the rest of the story, and more from Tori, here.

HLHS Dad goes to Washington D.C.; Part 1

Chris Perez attended the Congenital Heart Legislative Conference on February 25-26, 2015.  Here, he writes about the first day of this adventure. As the father of a child with a serious congenital heart defect, Chris regularly writes about his experiences in the CHD world on his blog: Half Heart. Whole Life.

As Day 1 began to arrive it became obvious that the weather was determined to throw a monkey wrench into my plans.  On the day before I was scheduled to fly out, we actually got a little bit of snowfall here in Charlotte.  Now it didn’t even snow a half-inch and none of it stuck to the roads, but here in the Carolinas that amount of snow is equal to the apocalypse!  Schools closed, people didn’t go to work, the grocery stores were packed.  Me?  I went to work.  After all, I’m a New Englander…so for me this was just an average Tuesday.  Still, I’d be lying if I wasn’t concerned about my upcoming travel since they cancel things at the drop of a hat here.  Luckily, though, the flight was still on and the roads were nice and clear. I had everything packed, including my leave-behinds and some CHD Awareness colored socks (I love crazy socks):

 

I had a good 50-minute flight into DC, picked up my bag and used Uber for the first time to get to the hotel.  I had a credit due to being a UNCC alum, so I put it to good use.  What a great experience…WAY better than a taxi!  After a few issues with my room key (the first 2 didn’t work) I managed to get a little down time before registering for the conference and grabbing some lunch.  At registration we were given these cool pins that I immediately put on and it actually started up a lot of conversation in the elevators, which was great:

 

I jumped right into sitting with a table full of strangers and it was great to meet people from all across the country: I met a heart parent from right there in DC, a heart family from Florida, a family who unfortunately lost their little one (kudos for them for being there to advocate…so brave!), and I also met this guy:

This young man is Jacob and he’s from San Diego.  He was born with HLHS and received a heart transplant at a young age.  He was a very cool guy and had an amazing story and outlook on life.  I got to spend some time hanging out with him and his Aunt on this trip and I’m glad I had the opportunity.  I am going to blog more in depth about him and the work he’s doing, so keep an eye out for that!

So anyhoo, we kicked off our training, which included discussions on how to tell our story, decorum on the Hill, how to use social media, and lots of presentations from guests.  These included a CHD survivor and a heart parent (her son was the Darth Vader kid from that car commercial a few years ago).  We also saw a very interesting presentation from the NIH regarding CHD research.  It was really fascinating and I am going to be blogging more in depth about it soon (I know there’s a lot of “see me later” stuff going on), but here’s a little preview:

TO SEE THE PREVIEW AND READ THE ENTIRE BLOG, visit the original post here.

A Time to Gather

A Time to Gather (Mile)Stones Together: The Importance of Marking Our Days

steenman Garvera

As Solomon said in Ecclesiastes, “There is a time for everything–” including a time to celebrate.

Sometimes, it’s easy for the days to blur together–after all, they often fly by! I’ve heard my more cynical friends scoff at those who attach meaning to new year’s resolutions, or even celebrate New Year’s Eve at all–after all, they say, it is just another day. They argue that the divide between last year and the new year is completely arbitrary. What is age but a number? What is a birthday but just another day older, like every other day?

As a heart mom, I’ve learned that birthdays are more than an excuse to have cake and receive special gifts.They aren’t even “just” a victory–because every precious day is a victory. I’ve come to see birthdays as a time to reflect on where we started and on how far we’ve come since then. I’ve learned the importance of marking our days as a way of counting our blessings together–a “gathering of stones,” so to speak. Marking days with observances, as well as gathering stones, is a cultural practice that spans history and geography. Living in Nepal, I saw where people had gathered stones to create shady places for travelers to meet, rest, and reflect during long journeys. In Mongolia, I saw ovoos–piles of stones where travelers gave thanks to the elements for safe passage. Other cairns serve as markers for mountain summits, guideposts on paths, or memorials to historical events. in other words, they help us find our way and they connect us–fellow travellers–to each other.

Kieran

Like PCHA, my son Kieran also celebrated his birthday this month. As a baby, I would hear about all the milestones he was “missing,” when in reality, he wasn’t missing them at all–he was just catching up to them! Now, when I look back on how he wasn’t talking by his first birthday and I compare it to the picture below, which shows how proud he is for designing and making his own birthday cake, I realize just how far we’ve come in the past 6 years. In a system filled with benchmarks for children–be they developmental charts at the pediatrician’s office or educational assessments at school–we in the CHD community can come together and celebrate our own milestones. Together, we can gather these blessings like stones and put them on the map of our own unique journeys. My guess is that if we gather our blessings together, they would look something like Swiss cairn pictured above, which marks the summit of a mountain. It’s no coincidence that my son’s middle name is the Nepali word for “mountain.” It’s because we knew even before he was born that he would reach the summit of his special journey someday and that when he saw the view from the top, he would know it was all worth it.

There’s a reason, I believe, for our tradition of sharing birthdays and other holidays with family and friends. A reason that can include cake and ice cream, but that also includes “a time to gather stones together” as a way to mark this day as a place worth setting another guidepost on the map of our journey. I am happy that, as a community, we are invited to celebrate PCHA’s first birthday together. Research, treatment, and outcomes are always evolving in the CHD world. As heart parents and as a community, I hope we will saying, “what a difference a year makes!” for many years to come.

 

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.

 

Birthdays – Reflections and Celebrations

My sister, Kristin, was born in January 1980 with TOF.  Her complete repair, at Boston Children’s, was one of the first in the country.  I know this because Wikipedia states that the complete repairs began in 1981 and I know my sister’s surgery happened in late 1980.*

I never thought about this until my own daughter was born in January 2012 with the exact same defect.

As PCHA celebrates it’s first birthday, I decided to write about birthdays for our blog.

Maggie Birthday for PCHA

My mom told me that Maggie’s birthday would remind me every year of the pain and anguish we felt after her TOF diagnosis.

I worried about this the entire first year of her life.

Turns out, we arrived home after work on Maggie’s first birthday to 2 baskets of flowers, a balloon flying from our mailbox and a bunch of balloons tied to our front door.  Such a joyous day.  The next day, Saturday, our family from all over the state came to watch her eat her own little chocolate cake and scoot around with her cousins.  We ate pizza and drank soda from paper cups.  I never once thought about the day the pediatrician told us our daughter had a severe heart defect that would have to be fixed through open heart surgery.

Why would I?  She is alive, she survived 2 surgeries and she is the coolest little 26 pounder who eats Z Bars while dancing to the music from “Paw Patrol.”

My mom also warned me her scar would make me sad.  Sometimes I worry that she will feel self conscious and my heart aches to think of a future classmate teasing her or asking her questions about the tiny, white line down her chest.  But she asked me a few months ago, “What dat?” and I told her “You had surgery.  Just like Aunt Kristin.”  So now she points and says “I had surgry? Like, like Kristin and not you?” It’s the sweetest, most innocent comment and it does make me sad sometimes for a quick instant until I thank God and every angel in heaven that our daughter is OK.

Maggie will turn 3 in January and I think I am going to have her party at the circus school in town.  I think twirling ribbons with 10 other toddlers after eating a bunch of cake will be a blast.  Every birthday Maggie celebrates reminds me of how blessed we are and I send prayers out to all the heart families struggling with their little ones.  I do that every day, not just birthdays.  We are a special group of people and I don’t take any birthday for granted.



*http://en.wikipedia.org/wiki/Tetralogy_of_Fallot

Total surgical repair

The Blalock-Thomas-Taussig procedure, initially the only surgical treatment available for tetralogy of Fallot, was palliative but not curative. The first total repair of tetralogy of Fallot was done by a team led by C. Walton Lillehei at theUniversity of Minnesota in 1954 on an 11-year-old boy.[21] Total repair on infants has had success from 1981, with research indicating that it has a comparatively low mortality rate.[22]

HeadShotSDAA North Carolina native, Stephanie Dorko Austin works as a political fundraising consultant and serves on the Board of Trustees of Follow the Child Montessori School and the development committee of the Frankie Lemmon School. A Phi Beta Kappa graduate of Trinity College in Washington, DC, Stephanie and her husband, Will, live in Raleigh with their awesome and amazing daughter, Maggie.

We are here… CHD Support

PCHA recently had the privilege of attending the Mended Little Hearts Leadership Training Dinner. The following message was read by National Program Director Jodi Lemacks:

Why Mended Little Hearts Is Here

We are here because after a diagnosis, in your darkest hours, when you have pain in the pit of your stomach and you feel like your heart may break open, there is immeasurable power in having someone take your hand, either virtually or in person, and say, “Hey, you don’t have to walk this journey alone. I will be right here by your side.” And for the first time since you heard those horrible words about your beautiful child’s heart, you have a glimmer of hope, and you think just maybe you can do this.

We are here because when you are sitting in the hospital day after day, hoping that your child survives, and you get a care bag (or our new Bravery Bag) full of items that are perfect for helping you through your hospital stay, you understand that others have walked this path and care about you. You feel comforted, and again, you know you are not alone. You realize that although we can’t give you what you really need, a healthy child without a heart defect, we can give you things to make life just a little easier for you and your family.

We are here because once your child has gone through the initial surgery, heart procedure or hospital stay, you get home and think, “Now what?” You feel scared and confused and have more questions than answers. You wonder if you are doing anything right and if your child is going to be okay. What if you make a mistake? You find that having someone, or even a whole group of people, who continue to support you, to answer questions, to provide information and to connect you with the resources you need gives you confidence and courage so you are better able to care for your child.

We are here because the answer, “Really, I didn’t know that,” to the question, “Did you know that congenital heart defects are the most common birth defect in the U.S.” is simply unacceptable—especially when there is still not a cure for congenital heart defects and our kids need one. We know that many of the answers we do have for our kids—the surgeries and procedures—are temporary, and we live our lives hoping and praying that the technology and/or treatment will come before our kids need them. We know the importance of raising awareness in our communities and nationally. We advocated on issues that affect our kids. And we make a difference—even if it is sometimes just one person at a time. Because we are here, you have confidence that we will keep raising awareness until the there is a cure.

We are here in honor and memory of all of the beautiful children and adults who have lost their battle to congenital heart disease. We work for better quality and new treatment options to say, “This disease will not take any more of our children! We have had enough!” We are game changers who won’t stop until CHD is no more.”

Mostly though, we are here because helping others not only helps them, but it helps us as well. When we are able to take a painful experience and use what we learned to give back to others, we heal. We show the world clearly that although our child has congenital heart disease, it did not defeat us, and it cannot define us. We are stronger than we knew, and our service to others makes the world a better place.

Personally, I am very grateful Mended Little Hearts is here for us when we need it. Thank you all for your time, dedication and service. You all help to improve the lives of families throughout the nation, and while you may not hear from the families you serve often enough, know that what you do makes a difference.

For more information, online support or to find a local group near you, visit mendedlittlehearts.org

Mended Little Hearts is a program of the Mended Hearts Inc., a non-profit, volunteer-based organization providing hope, help and healing to heart patients and their families since 1951.The Mended Little Hearts program works nationally and in communities to support children with congenital heart defects and their families.

Wabi-Sabi: The beauty of our scars

Wabi-sabi

“Wabi-sabi is a beauty of things imperfect, impermanent, and incomplete.

It is the beauty of things modest and humble.

It is the beauty of things unconventional.”

–Nancy Walkup, from Japanese Aesthetics, Wabi-Sabi, and the Tea Ceremony

 

My son, Kieran, has a wabi-sabi heart. As a child with HLHS (hypoplastic left heart syndrome), his heart is covered in stitches from multiple operations. Arteries have been disconnected and rejoined, material has been added in the form of patches and shunts (you can watch a diagram of how the heart is reconstructed in Stage 1 here–it really is amazing!). Even after 3 stages of surgical repair, Kieran’s heart is still missing his entire left ventricle–it is incomplete, it is imperfect, and it is utterly unconventional.

Like the kintsugi tea cup you see above, my son’s heart has been worked on by a skilled master, and he carries the marks of repair–we call them scars–both inside and out. Kintsugi is the art of repairing broken ceramics with a gold alloy, yet far from being an isolated artform, it is also a highly-prized representation of the wabi-sabi view of the world.

You see, kintsugi pieces are prized precisely because they have been broken. They are said to be more beautiful, more unique, and “stronger at the broken places” (to quote Ernest Hemingway) than they were in their original form. The gold alloy you see in these pieces is merely symbolic of their real value–a representation of how the broken lines are so beautiful, and so valuable, that they are rejoined with gold instead of glue.

In our busy modern lives, we often try to repair our broken places with glue. We quietly work to piece our lives back together after life-changing events, hoping that if we do a good enough job, the cracks won’t be readily visible. But how strongly does a glue hold the pieces of a life, or even a teacup, together?

Sooner or later, we all carry scars, whether they be internal, external, or both. We will all break in different places, and in different ways. Kieran’s sternal scar, running from the base of his neck to the top of his belly, looks more like kintsugi than glue–shiny, smooth, hard-fought, and as if something of great value and detail was invested there. We can see this value in our own lives, and in each other’s, and appreciate how this process can transform us into something more beautiful and special than we ever realized.

Embracing and accepting the beauty of our scars can put us at odds with a culture that attempts to sell us perfection, youth, and improvement in the guise of shiny new things. But these things, despite their market price, come off a factory assembly line, and their value might literally be a dime a dozen. Maybe the real value is in our treasures that have been fixed and patched and healed with the gold of experience, wisdom, love, and kindness.

My husband has had a long-standing admiration for Japanese art and cuisine that was catching–early on in our dating relationship, he inspired me to start reading Japanese novels and opened up a new facet of literature I had never considered before. Little did I know, however, that years later, I would find so much comfort and healing in the notion of wabi-sabi. Wabi-sabi has permeated Japanese culture in the arts of gardening, flower arranging (ikebana), tea ceremonies, and fashion. However, wabi-sabi is not confined to visual art, spatial arrangement, or a style of dress. It is an outlook on life, a way of seeing the world, and a reconsideration of all things beautiful and imperfect. It suggests that the most beautiful things in life–the most unique, the most fascinating, and the most miraculous–are those that have become more perfect through imperfection, and more valuable by being broken.

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.

A Day in Little Rock

Traffic

The perspective was daunting.

There, in the cafeteria of Arkansas Children’s Hospital, behind tinted windows, gazing out over I630 I counted the endless number of cars that passed and wondered, “Do any of these drivers know what’s going on in here?”

With my well earned cafeteria bucks (earned from endless hours in the NICU pumping station), I took my breaks and ate and weeped and pondered the future of my newborn son, and cursed the passing drivers for not having anything more pressing to accomplish other than getting home.

At 5 weeks of age my baby boy was in a hospital bed in the CVICU, two floors above me, with his chest cracked open.  After successful open heart surgery to correct a congenital heart defect, his immediate post operative recovery did not go as planned.  My husband and I had ventured out of the ACH “biosphere” for the first time in three days, and were sitting in a booth at La Hacienda savoring a plate of refried beans and enchiladas, when we were texted to return immediately with nothing more than, “something is wrong.”

Upon arrival at the doors of the CVICU we were met by an Intensivist, who kept us out of the now Code Blue CVICU.  With an entire squadron of medical professional surrounding his bed, my only vision was of his cardiologist standing above him performing some kind of life saving intervention.  Numbly I asked, “Is he going to die?”  “I don’t think so…” was his reply.  How comforting.

In the hours that followed we were advised of his condition with words like, “unexpected”, “abnormal heart beat” “worst case scenario” “ECMO” “heart transplant.”  None of which had been uttered to us prior to surgery.  The most serious outcome from his repair, we were told, was the now mandatory use of antibiotics prior to any future dental work.  Funny to think that his teeth were to be our biggest worry.

As dusk gathered around the hospital, hours after his surgery, my husband and I were forced to make the decision – do we stay the night? Or go home to our other two young children?  A gentle-hearted Attending “talked us off the cliff” by advising us to “go home, hug your kids, and get some rest.”

After a restless night, pumping every three hours to manage my milk supply, with many phone calls to check on “Warrior” (our appropriately chosen code name), dawn broke, and he was still alive.  The drive back to the hospital was agitated.  What would we encounter when we crossed the threshold?   As we cautiously approached the doors we were met by a guardian angel, I mean a nurse who said, “I think we’ve turned a corner.”  Words that, should I ever get a tattoo, would be prominently etched on my skin.

In the days and weeks that followed, as I sat, watched, and waited, for monitors, tubes, and lines to be removed, I marveled at the compassion and competency of those who cared for my son.  Gratitude outpouring from a simple mom who had entrusted his care to so many whom I had never met.

In the years since his surgery, we celebrate his life by eating dinner at the ACH cafeteria on the anniversary of his surgical date.   Our normal dining spot is by those same tinted windows, where I still wonder why everyone is in such a hurry, and if any of the drivers, as they zoom by this grand temple dedicated to care and healing, ever stops to think of the thousands of lives behind the façade, families like ours who have a story.

The next time you are driving down the highway – take a look, a brief look, and say a prayer that you are on your way home.
© Jacob Slaton PhotographyMelissa McCurdy is a mother of 3; wife of 1; daughter, sister, friend, aunt; lover of football, politics, food, travel, walking, theatre and all things literary. She’s without talent in most normal Mormon activities – she doesn’t paint, sew, craft, scrapbook or quilt. She shelves and reads books and for a living, and could spend hours staring at bookshelves. Her youngest was born with a congenital heart defect and had open heart surgery at 5 weeks. She knows more about Children’s Hospitals than she ever wanted too. One of the highlights of her life was attending the first inauguration of President Barack Obama, primarily because she had better seats than Oprah.  And when she grows up, she wants to be the first female commissioner of the NFL.

 

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.

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.