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.

 

Take Action to support Newborn Screening

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PCHA supports the screening of newborns for critical congenital heart defects. This legislation indirectly supports CCHD screening oversight efforts.  

From our friends at the March of Dimes:

We’re at a critical point where YOUR voice can make a real difference! The House passed the Newborn Screening Saves Lives Reauthorization Act (H.R. 1281) in June; however, the Senate failed to take action on final passage of the bill before adjourning for the month of August. Please contact your Senators and tell them to take swift action to pass this important legislation when Congress returns in September. There aren’t many days left for the Senate to take action.

Tell your Senators to pass the Newborn Screening Saves Lives Reauthorization Act.

The Newborn Screening Saves Lives Reauthorization Act will renew federal programs that provide support and guidance for state efforts to ensure that every newborn is tested for at least 31 conditions present at birth which, if undetected and untreated, can lead to serious disability or death.  Please make your voice heard on behalf of babies – they are counting on you!

P.S. Mark your calendars! September 8th will be a National Newborn Screening Saves Lives Call-in Day if the Senate hasn’t passed the bill.

Taking action is easy:

1) Find your Senators at Senate.gov

2) Call the DC office number listed or complete the online email form:

Simply tell them to “Pass the Newborn Screening Saves Lives Reauthorization Act”

3) If you take action, please Tell Us About It!

 

What’s a Birthday without Party Favors?

And the winner is:

Diane Kowalik

 

Thank you to all those who entered.  Our contest is now over.  A winner was picked at random from qualified entries using Random.org

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As we celebrate our 1st Birthday, PCHA is giving away a fun assortment of Birthday Party Favors including:

  • Happy Birthday Hat
  • Happy Birthday Sunglasses
  • Birthday Party Horns (6)
  • Birthday Noise Makers (4)
  • PCHA T-Shirt (Not pictured. Size to be determined by winner)
  • Confetti

Enter all week long!

You will be able to enter multiple times:

  • Share your birthday wish. Share a new one each day!
  • Participate in Birthday Photo Fun!
  • Be a fan of our Facebook Page.

The contest will close at 5pm ET, Friday August 22nd.

We will randomly select the winner on our Birthday – Saturday, August 23rd.  The winner will be contacted directly, and announced publicly via a blog post on Monday, August 25th.

Enter now:
a Rafflecopter giveaway

* Please note that the Pediatric Congenital Heart Association is very concerned about your privacy. We will not share your personal information at anytime without prior consent. Entry into this contest will automatically enroll you into our 1 Voice / 40,000 Strong email list.  You can opt out from receiving emails at any time simply by selecting unsubscribe on the email or sending an email to info@conqueringchd.org with UNSUBSCRIBE in the subject line.

Save the Date – Legislative Conference 2015

PCHA is proud to bring you:

Congenital Heart Legislative Conference 2015
February 25-26, 2015
Hyatt Regency Hotel Washington D.C.

We are looking forward to collaborating with other congenital heart organizations to provide you with:

  • Up-to-date policy information and how it impacts children and adults with heart defects
  • Leadership training to develop skills needed to share your story and make a difference
  • A day on Capitol Hill meeting with your legislators

Mark your calendars – if you have ever attended CHD Lobby Day before, you won’t want to miss this!

Further details will be available as we prepare to open registration in December.

Save the Date Logo Long

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.

Your Donation = The Perfect Gift!

Help us Celebrate our Birthday!

Birthday donate button 2

Sometimes it is really hard to pick out the perfect present.  That is why gift cards have become so popular.

Since it is our birthday, we wanted to make gift giving as easy as possible.  In fact your gift does more than simply make us smile:

Your gift supports activities such as:

  • Research Matters – building compassion and engagement in research
  • Quality Project – uniting medical professionals including surgeons, cardiologists and nurses, leaders in quality, with parents – working together to empower parents and patients
  • Legislative Conference – Learning and leading by bringing your stories to Washington D.C. to educate lawmakers about federal research

We need your help during our Birthday Month to reach our goal of raising $10,000 to support these important projects.

This is one birthday gift that will truly make a difference!

Donate, today!

“As we work to create light for others,

Celebrating our 1st Birthday!

In the congenital heart disease community,

we don’t take birthdays for granted.

Join us as we celebrate PCHA’s 1st Birthday!


Learn more about how you can get involved throughout the month of August:


Give a gift!

Tearing open a birthday present is fun.  Giving one brings great joy, too!  Your monetary gift, in celebration of our birthday, is a great way to honor or remember a loved one or friend.

Education, Research and Advocacy are key factors necessary to Conquer CHD.  Your gift supports activities such as:

  • Research Matters – building compassion and engagement in research
  • Quality Project – uniting surgeons, physicians and leaders in quality, working together to empower parents and patients
  • Legislative Conference – Learning and leading by bringing your stories to Washington D.C. to educate lawmakers about federal research

We need your help during our Birthday Month to reach our goal of raising $10,000 to support these important projects.

Birthday donate button 2

Photo Fun! #PCHAbirthday

Help us flood our Instagram Feed – Show us how you celebrate a CHD birthday! Share your picture on Facebook or LinkedIn, tweet it, or post it directly onto Instagram.  Be sure to use the hashtag #PCHAbirthday so we can find it.  We will collect the pictures and share them throughout the month!

blowing out candlesHere’s quick links to our accounts:
Facebooktwitter-buttonlinkediniglogocolor










Share a badge:

Birthday Badge

 

Copy, paste and away you go!  Social media will never be the same!


Party Favors for you!
party favors

Update: This opportunity is now over.  Congrats to our winner Diane Kowalik!

Don’t worry, we didn’t forget the party favors.  During our birthday week, August 18-23, you will have the chance to enter and win great prizes from birthday hats to gift baskets.

Make sure to follow us on Facebook and Twitter to learn how to get in on the action!

At the Pediatric Congenital Heart Association we work really hard, but we also know how to Celebrate! Join us!

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