Mother’s Day After Losing a Child

Published in the Huffington Post

Holidays are big deal in this country, and my family is no exception. We got little packages for Halloween and Valentine’s Day, and big packages for birthdays and religious holidays. In fact, some birthdays felt more like birth weeks. It was good because holidays represented happiness.

Ten years ago, my 3 month old son, Simon, died in his sleep. He died from an undetected heart condition called Long QT Syndrome that has been linked to up to 15% of all sudden infant deaths (SIDS). It is also one of the several conditions that cause student athletes to drop dead.
After his passing, my outlook on life changed. So too did my unconditional love for holidays. I had to change my expectations and redefine my sense of “normal” because parents didn’t bury children in the world I knew.

It’s been a very difficult road. My marriage was challenged. My friendships were challenged. My faith was challenged. I have learned so many lessons about life and yes, holidays, from this difficult journey. Here are a few.

1. Time heals nothing. You’ve heard the saying that time heals everything. It’s also been a song. It’s appeared on greeting cards. Well, it is completely false. Time can be our friend or enemy because it gives us the opportunity to make choices. We can choose to be consumed by guilt and bitterness, or we can choose to grieve, reflect, question, evolve and heal. Fortunately, I’ve been surrounded by people who encouraged me to use time in a productive manner. How will you use your time?

2. Grieving has no instructions, but neither does parenthood. When Simon died, I had no information on how to cope. To complicate matters, I also had no idea how to continue raising my 2-year-old daughter. Somehow, I figured it out. I did what seemed right. I called on the resources that I needed. Despite all of this uncertainty, there is one certainty: Grieving is critical. It is mandatory. It allows us to process and hurt. Most importantly, it eventually grants us permission to continue living. Your peaks and valleys will be different than mine. So, be patient on your difficult journey and get the help that you need (you will need it).

3. People aren’t on the same page, or even in the same library. I credit our therapist with this saying. Therapy was great because my perception and perspective were destroyed after losing Simon. I was surprised and confused by some of the things that I heard after Simon’s death from family, friends and acquaintances. For example, an awkward but popular response was, “Well, at least you have another child.” Of course, none of these encounters were intended to be malicious — nobody knows how to navigate this kind of tragedy, especially those close to you. They just want you happy again. As I adjusted to my new “normal,” those around me did too. The sooner I realized this, the easier it got to understand and forgive.

4. There is no right time to let go. The early months and years were easy. I was just depressed. However, that doesn’t (shouldn’t) last forever. In time, I was able to sneak a laugh at a movie, have fun at dinner with friends, and even enjoy family vacations. I learned to temporarily suspend the guilt and despair. There was no time clock or expiration label for this exercise, and letting go was not the same as forgetting. My awful days still exist — birthdays, first days of school, graduations. However, I eventually gave myself permission to let go so that I could move closer to becoming that parent that Simon would have loved.

5. Celebrate your child. The death of a child shatters your world. It consumes you. It can even define you. I used to think that I had a giant target on my back. I was always waiting for the “other shoe to drop.” Then, I shifted my focus. I thought more about Simon’s life than his death. I contemplated the time that we had together, instead of the decades that we lost. I took steps to keep his memory alive because that’s a way for me to extend his life. We started an organization called Simon’s Fund. However, there are so many ways to celebrate a child and watch him/her contribute to this world from another place. Have an annual day of service, plant trees, make donations or start an organization. Make your child’s life the topic of conversation and a source of celebration.

I never got to celebrate a Mother’s Day with Simon. He arrived just before Thanksgiving and left right after the New Year. However, the legacy he left for our family and others will forever be celebrated and cherished on days like Sunday.

Whatever joys or sorrows are contained in your motherhood story, I wish you the best this Sunday.

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."