Mother’s Day – Post Mortem

Published in the Huffington Post

Another Mother’s Day is in the books. It is my 44th. For thirty-one years, the day was dedicated to honoring my mother.

In my 32nd year, we welcomed Sally, our first child. Whoa did Mother’s Day change! It became so much more special and relevant because I finally knew what it meant to be a mother. With that first sleepless night and diaper change, appreciation for my mother went through the roof.

In my 34th year, it changed again. Simon was born. Ninety-six days later he died. He was a seemingly health three-month old. However, he had an unknown heart condition. After he died, I was diagnosed with the same condition.

Now, eleven years later, I still have a hard time articulating what his death did to my Mother’s Day. I don’t know how to approach it. I have two beautiful kids, and my mom lives fifteen minutes down the road. There is so much to celebrate and appreciate. But…

Most girls have thought about becoming a mother. From what I’ve read, the majority of women who experience it claim that it is the most challenging and rewarding part of life. It is a role for which we are completely unprepared. Somehow, we manage.

As I struggle to process my emotions for yet another Mother’s Day season, I want to share some quotes about motherhood. Some are profound. Others are endearing. You’ll recognize a few of the names. You know, the celebrities. It’s fun to see how famous people view motherhood.

However, pay closer attention to the quotes from the other women. These are women I got to know after Simon died through a group called Parent Heart Watch. Like me, they lost children to unknown heart conditions and founded organizations to spare other families from tragedy.

Like me, they struggle to make sense of this holiday, and well, a world where you can lose your child to a detectable and treatable heart condition.

Motherhood is tough. If you just want a wonderful little creature to love, you can get a puppy.
Barbara Walters

Motherhood has completely changed me. It’s just about like the most completely humbling experience that I’ve ever had. I think that it puts you in your place because it really forces you to address the issues that you claim to believe in and if you can’t stand up to those principles when you’re raising a child, forget it.
Diane Keaton

The natural state of motherhood is unselfishness. When you become a mother, you are no longer the center of your own universe. You relinquish that position to your children.
Jessica Lange

I never imagined the range and depth of feelings that motherhood would introduce into my life. I’ve gone from one extreme of incredible pride, an abundance of love and immeasurable joy…to the unthinkable edge of despair and knock-the-wind-out-of-you total devastation after losing my precious 19 year old daughter without warning. At the best moments before my tragic loss, I remember having the feeling that my heart would burst with love and joy. And now, it’s as though my heart has been completely shattered and I’m not sure if the pieces can ever be reassembled.
Julie Walker, The Peyton Walker Foundation

Each of my children carry a piece of my heart but it broke into more pieces than it was made of, when my son died.
Darla Varrenti, Nick of Time Foundation

Being a mother: There is no greater gift, nor bigger heartache.
Jeremy Lopynski, Ryan Lopynski Big Heart Foundation

Motherhood is a life-long promise from you to your child. You promise to protect and nurture and care for your child, to help them grow to adulthood. Sadly, despite your very best efforts, tragedy can wipe that out in a moment, and you’re left shouldering the pain of a failed promise.
Mary Beth Schewitz, Max Schewitz Foundation

Motherhood is the greatest gift and I’m thankful God chose me. Motherhood has brought me unconditional love, hope, joy, sorrow, and laughter. Motherhood is pure beauty.
Laura Friend, Run for Sarah

I guess these sayings are really true. You don’t know what you got until it’s gone. To understand, walk in another (wo)man’s shoes.

Motherhood is something that we dream about and imagine. We know there will be laughter and celebrations. We know there will be tears and heartbreak, but we think it’ll be the “my boyfriend broke up with me” or the “I failed a test” kind.

I didn’t know how to change a diaper. I didn’t know all of the different kinds of formula available for reflux. I didn’t know how to install a car seat. I didn’t know how to bury a child. I’ve learned all of these things on the fly. I’ve faked it.

There is one thing I do know. Our children don’t come with a timeline or expiration date. Their roads and destinies are unknown. I was prepared to do whatever it took to get Simon to his destination. Instead, he gave his life for me, so that I could discover my heart condition and reach my destination, whatever that may be. I’m not sure that is how motherhood is supposed to work.

 

Jake Berman

“I attended a heart screening at Colonial Middle School when I was ten. I was in the marching band and liked to hike and rock climb. I was diagnosed with Wolff Parkinson White Syndrome. After my procedure, I kept doing the same things.”

Whitney Jones

Whitney’s commitment to heart health advocacy began at 10 years old when she and her mother, Rayna, were diagnosed with Long QT Syndrome during a Simon’s Heart screening at Downingtown West High School. Despite the diagnosis, Whitney pursued her passion for cheerleading and continued to thrive in the sport through her college years at St. Joseph’s University. After graduating, Whitney joined Stryker Instruments as the Senior Specialist for Off-Site Meeting and Events, where she skillfully orchestrates events that promote health and medical innovation. Further extending her impact, Whitney is an active member of the Simon’s Heart Young Professionals Committee, while her mother Rayna contributes her expertise on the Board of Directors.

Katie Asper

“I attended a heart screening at Upper Dublin High School when I was ten. I played soccer. I was diagnosed with Wolff Parkinson White Syndrome and had an ablation to fix the problem. I attend Temple University.”

Matthew Green

“I attended a heart screening in Mason, Ohio, when I was ten. I participated in baseball, basketball, and diving. I was diagnosed with an atrial septal defect. I had surgery to repair the hole and started wearing a protective shirt during activity. I am graduating from Miami University.”

Valerie Krawitz

“I attended a heart screening at Colonial Middle School when I was ten. I played baseball, soccer, and track. I was diagnosed with Long QT Syndrome and an atrial septal defect. I had heart surgery to repair the hole and I take medicine for the Long QT. I can’t play competitive sports like I once did, but found other activities. Next year, I’m attending Penn State University.”

Drew Harrington

“I attended a heart screening at Radnor High School when I was ten. I played lacrosse, tennis, and basketball. I was diagnosed with Wolff Parkinson White Syndrome. I used to feel my heart beat really fast, but just assumed it was fine. Coincidentally, on Simon’s 7th birthday, I had a procedure called an ablation. Today, my heart is fine and I attend the University of Richmond.”

Alaysia Keeley

“I attended a heart screening at Norristown High School when I was ten. I played softball and enjoyed going to the mall with my friends. I was diagnosed with Long QT Syndrome. I had to stop playing sports and drinking soda. Now, I take medication and live a normal life.”

Kyle McCabe

“I attended a heart screening at Norristown High School when I was ten. I played baseball, basketball, and football. I was diagnosed with Long QT Syndrome. I stopped playing sports to protect my heart, but I still manage to have fun.”

Melissa Fair

“I attended a heart screening at Colonial Middle School when I was ten. I loved dancing and hanging out with my friends. I was diagnosed with Partial Anomolous Pulmonary Venous Return and Atrial Septal Defect. The doctor told me that my life would have been cut short if I hadn’t found out. I’m graduating from Penn State University this year.”

Zach Steffens

“I attended a heart screening at Stillman Elementary School in Tenafly, N.J., when I was fourteen years old. I love running, Tae Kwon Do, and Armenian cultural dancing. I was diagnosed with a rare congenital defect called ALCAPA (Anomalous Left Coronary Artery from the Pulmonary Artery). I had open-heart surgery and recovered well. One month later, I suffered a cardiac arrest and an automated external defibrillator (AED) saved my life. I now have an implantable cardioverter defibrillator (ICD) and am healthier than ever. I will be attending The College of New Jersey and majoring in biomedical engineering.”

Annie FitzPatrick

“I went into sudden cardiac arrest at a local convenience store when I was 19 years old. My heart stopped and the only reason I am alive today is because an AED was readily available. I was diagnosed with Long QT Syndrome shortly after and was introduced to Darren and Phyllis with Simon’s Heart. I have been an active volunteer ever since. I went on to graduate Cum Laude from Drexel University with a double major in Business Analytics and Marketing and now work at a leading chemical company.”

Maeve Quinn

"I had a sudden cardiac arrest during softball tryouts at my high school. I was 15 years old. Thanks to the quick thinking of my coach and athletic trainer, they started doing CPR and using an AED immediately. This helped save my life. I had an implantable defibrillator surgically placed in case this happens again. I volunteer to educate people on the importance of screenings, learning CPR and the use of AEDs. Anyone can save a life like mine! I am planning on going to college for nursing."