We caught up with the brilliant and insightful Bernadette Wile a few weeks ago and have shared our conversation below.
Bernadette, so good to have you with us today. We’ve always been impressed with folks who have a very clear sense of purpose and so maybe we can jump right in and talk about how you found your purpose?
Why am I here? It’s a question my husband and I have asked over and over since our only child, Caleb, passed away unexpectedly in 2016.
Eight years later, my brain still can’t comprehend why the most beautiful, giggly boy was stolen from this world, and I wasn’t. How was it possible to go from a day full of animated innocence and brightly colored toys to this? “This can’t be happening. This can’t be real. I just want my baby back.”
In the movies, people let out a guttural scream or collapse, but that hasn’t been the case for me. Sometimes I think I’m still in shock. Everything inside of me is yelling and throwing things and cursing whatever happened to my son, but somehow, I’m still standing.
I’ve never been an outwardly emotional person, but losing Caleb has brought more spontaneous occasions of overflow beyond my control. I’ve cried myself to sleep and sobbed until I’ve literally run out of tears. I’ve stared blankly into the sky and my own thoughts for hours. I’ve relived the horrors of this real-life nightmare in the grocery store, traffic, halfway across the world, work and every place in-between. I could tell you stories that would break you and more that would make your blood boil. At the end of the day, the silence is still deafening. The pain is still a wound no one should ever have to endure, and I miss Caleb with every ounce of my heart and soul.
So why am I still here when the most joyful little boy is gone? What is the point of getting out of bed and going through the motions every day? Maybe you are wondering the same thing in your own situation.
There is no other way to describe losing a child. It is truly hell on earth. As my doctor told me shortly after losing Caleb “I don’t know how people get through this, but I know somehow people do.” After reading enough self-help material that social media algorithms thought I was a therapist, I still don’t know. What I CAN say is that I believe our purpose on this side is to help each other even if it’s a simple act of kindness. I think of this quote often:
“I am only one,
But still I am one.
I cannot do everything,
But still I can do something;
And because I cannot do everything,
I will not refuse to do the something
that I can do.”
-Edward Everett Hale
I also believe we are all fighting battles. It is a privilege when someone decides to pull me aside and tell me that something I said resonated, or I get a DM about a really tough event someone entrusts to reveal to me. I also find myself often repeating myself that “it’s not a contest.” Just because you aren’t living with child loss doesn’t mean your pain isn’t valid.
In a world where people can hide behind social media filters and highlights, I’ve found far more common ground in admitting I don’t have it all figured out and neither does anyone else.
I am not religious but there is a strong spirit that guides me. Google is a tremendous assistant but there are also various sources of wisdom if we take the time to look.
“These pains you feel are messengers. Listen to them.”
-Rumi
I also appreciate simple guidance:
“Try to be a rainbow in someone’s cloud.”
-Maya Angelou
“Just keep swimming.”
-Dory, Finding Nemo
We don’t have all the answers, but in our lowest moments, we know our new purpose is to make Caleb proud of his parents. We do that by spreading “The Caleb Effect” to a world who so desperately needs his message.
Let’s take a small detour – maybe you can share a bit about yourself before we dive back into some of the other questions we had for you?
As a little girl, I imagined growing up and becoming a famous singer/songwriter. However, my greatest privilege in life was becoming a mother. Since Caleb isn’t here to tell you his story himself, I’d like to introduce you in the only way I have left. Caleb Lennon Wile, the most beautiful, hilarious, lover of ALL creatures great and small, called <b>ME</b> “Mommy!” Singing, “flying” through the living room with him on my back or just sitting on the couch with multiple octaves of laughter together. There is not a gift more perfect. How lucky am I to have had a front row seat to the best show of my life? To quote a “popular” musical, “I have been changed for good.”
At only 2, Caleb was wise far beyond his years and ecstatic about the smallest things. His delight literally couldn’t be contained and his gleeful rays of sunshine jumped with him filling the room with joy. He might not have mastered the potty, but he was fiercely independent. Our little star knew his letters, colors and even how to spell his name! He had a true gift for giving everyone the kind of love they never even knew they needed. He shared this love freely and often to everyone he met, and knew exactly how to infuse happiness into each soul. Caleb never knew a stranger and never slowed down, except to look at the wheels of his “vroom vrooms” as he played on the floor. He smiled with his whole face and loved unconditionally with his whole heart.
<b>The Caleb Effect</b>
The Caleb Effect encompasses all the love Caleb Lennon Wile left the world. Shortly after losing Caleb, we started noticing positive things that were only possible because of his influence. People who avoided each other were now peacefully gathered. Stories of playful ladybugs and miraculous rose sightings were happening to many who knew nothing of each other’s experiences. Caleb made people more deliberate in spending time with those they love and more patient when they normally would’ve lost their cool. Caleb continues to make the world
realize that tomorrow really isn’t guaranteed so we have to live each day as if it were our last. We started referring to these things as “The Caleb Effect.”
There was not a cause for why Caleb passed so it was labeled as SUDC or Sudden Unexplained Death in Childhood. You’ve heard of SIDS but this is a different category of death that has not been studied to the same extent. SIDS research has received over $500 million in public funding to date while SUDC has received none.
<b>The Caleb Effect Foundation</b>
After a year of marking the number of months since we had last seen or kissed our sweet boy, we decided we didn’t want to allow the darkness of our grief to overshadow the brightest rays that are still shining from Caleb’s life. Instead of pausing on the 2nd of every month and letting the day weigh on our hearts, we are “Nice on the 9th,” the best day of our lives, when Caleb came to bring so much love. We celebrate the day of his birth with acts of kindness every 9th of the month (we call it Nice on the 9th). We also support research and advocacy for other affected families through the SUDC Foundation. We continue to share Caleb’s legacy and on the one year anniversary of celebrating our first Nice on the 9th, we became a 501(c)(3) nonprofit, The Caleb Effect Foundation.
<b>SUDC Facts:</b>
• Sudden Unexplained Death in Childhood (SUDC) is a category of death in children between the ages of 1 and 18 that remains unexplained after a thorough investigation, including an autopsy.
• Most often, a seemingly healthy child goes to sleep and never wakes up.
• At this time, we do not know what causes SUDC, how to predict it or how to prevent it.
• A medical examiner or coroner could rule a child’s death SUDC when s/he completes a thorough evaluation and finds no other cause of death.
• See the National Organization for Rare Disorders’ report on SUDC.
The latest data (https://sudc.org/facts-statistics/)
shows 525 children in the U.S. were affected by sudden unexplained death in 2022.
<b>Signs</b>
Sometimes in our darkest hours Caleb likes to give us signs that he is still with us in spirit. A little “Hi, Mommy and DaDa,” seems to come when we least expect it and need it the most. We hope Caleb will show up to you too and help guide all those that may be walking (and sometimes curled up in the fetal position) through the pit of despair.
In fact, as I was writing this, I kept hearing a slight tap against the wall. I thought I was losing my mind until a ladybug appeared inside my room. In December…
<b>THAT Question (IYKYK)</b>
One thing I want to share with anyone who has lost a child is a template (it’s totally free) for anyone who has ever wished for a less painful way to answer THAT question. “Do you have kids?/How many kids do you have?”
https://thecalebeffect.org/walking-through-hell
It is a seemingly innocent question, yet one that twists the knife for people like us. “Do I tell them about Caleb? Do I not? Will it be awkward? I don’t have time to explain.” All of these thoughts went through my head, so I decided we needed a better solution. I knew I would feel awful if I denied Caleb, but I didn’t want to explain it to anyone either. I’m normally extremely extroverted but I absolutely dreaded and even avoided meeting new people. Caleb was here and he will always be my favorite person in the world, but I couldn’t tell anyone that without having an extremely personal, drawn out conversation where we both left feeling awkward. I knew I had to change this so I came up with a new solution. Now we tell anyone who asks, “Yes, a forever 2-year-old son in heaven, Caleb. Please don’t be sorry you asked because he is an incredible little boy who made this world a better place, and is STILL making this imperfect earthly life kinder. People tell us that they are more patient with their kids because of him and that he made them realize how they shouldn’t take life for granted. We call this “The Caleb Effect.” Then we hand them this business card-sized message and all of the awkwardness disappears:
https://thecalebeffect.org/
There is so much advice out there about all the different skills and qualities folks need to develop in order to succeed in today’s highly competitive environment and often it can feel overwhelming. So, if we had to break it down to just the three that matter most, which three skills or qualities would you focus on?
1. It’s okay to not be okay 2. Find your “safe” people
3. PSA: You are never through it or even more cringe worthy “over it” so please go ahead and remove that from any conversation you will ever have with a grieving person
Most people mean well but we aren’t good at just sitting with someone in pain. Instead of trying to show them the silver lining or trying to fix it, Be like Winnie the Pooh and maintain healthy boundaries with those who can’t be as close as your favorite bear.
“It occurred to Pooh and Piglet that they hadn’t heard from Eeyore for several days, so they put on their hats and coats and trotted across the Hundred Acre Wood to Eeyore’s stick house. Inside the house was Eeyore.
“Hello Eeyore,” said Pooh.
“Hello Pooh. Hello Piglet,” said Eeyore, in a Glum Sounding Voice.
“We just thought we’d check in on you,” said Piglet, “because we hadn’t heard from you, and so we wanted to know if you were okay.”
Eeyore was silent for a moment. “Am I okay?” he asked, eventually. “Well, I don’t know, to be honest. Are any of us really okay? That’s what I ask myself. All I can tell you, Pooh and Piglet, is that right now I feel really rather Sad, and Alone, and Not Much Fun To Be Around At All. Which is why I haven’t bothered you. Because you wouldn’t want to waste your time hanging out with someone who is Sad, and Alone, and Not Much Fun To Be Around At All, would you now.”
Pooh looked and Piglet, and Piglet looked at Pooh, and they both sat down, one on either side of Eeyore in his stick house.
Eeyore looked at them in surprise. “What are you doing?”
“We’re sitting here with you,” said Pooh, “because we are your friends. And true friends don’t care if someone is feeling Sad, or Alone, or Not Much Fun To Be Around At All. True friends are there for you anyway. And so here we are.”
“Oh,” said Eeyore. “Oh.” And the three of them sat there in silence, and while Pooh and Piglet said nothing at all; somehow, almost imperceptibly, Eeyore started to feel a very tiny little bit better.
Because Pooh and Piglet were There. No more; no less.”
A.A. Milne
E.H. Shepard
How can folks who want to work with you connect?
We want to educate the public about SUDC. Most people have never heard of this (and when they read it they think it’s SIDS). It is just recently starting to be taught in medical schools so we would love for first responders, medical professionals, therapists and researchers to get involved, There are free resources available through the SUDC Foundation (including no cost CEM/CEUs) : https://sudc.org/medical-professionals/
We would also love for the younger generation (we see you and your spirit weeks raising money), celebrities and those with wider platforms to pick up the torch and bring much needed attention. I was fortunate to be able to attend an Adele concert last year (quite a story in itself) and knew I was supposed to give her one of the cards I discussed earlier. She saw Caleb’s picture, read the card (while singing I might add) and turned back to give me the most heartfelt hug of my life. I wish everyone could see Caleb the way Adele saw my little man.
https://thecalebeffect.org/2023
There has also been promising recent research garnering national attention . We hope to continue shining a light on kids like Caleb until we find a way to predict and prevent any other family from this kind of heartbreak. We have to do better.
https://www.nbcnews.com/nightly-news/video/study-points-to-potential-cause-of-sudden-unexplained-death-in-children-201568325
Do something kind for someone else today.
Say “I love you” and mean it.
Forgive.
Don’t wait.
Contact Info:
- Website: https://thecalebeffect.org/
- Instagram: https://www.instagram.com/thecalebeffectfoundation/
- Facebook: https://www.facebook.com/thecalebeffect/
- Youtube: https://www.youtube.com/@thecalebeffect3331
Image Credits
Angel Porch Photography-newborn family pic
