Finding The Steps That Moved Me Forward

For many bereaved parents, keeping our children’s memory alive is key to our survival. Sometimes that means talking about them and posting pictures. It can also mean launching a foundation and writing children’s books, which is exactly what Elizabeth did.

Please help me welcome Elizabeth as she shares her turning point in grief. Sharing our loss experiences can have such a profound impact. You never know when the one seemingly small thing you have to share is exactly what someone else out there needs to hear. Heal a Grieving Heart was born from this idea. It provides a platform for other grieving parents to share their stories, connect, and help others.

Finding The Steps That Moved Me Forward

When my Benjamin died, I was completely devastated. Heartbroken. Shattered. Lost. Broken. Suddenly incomplete.

And for us, it probably was not that unexpected. Ben had been sick for a year and a half. He had significant needs attributed to his cerebral palsy and epilepsy. And he really struggled with viruses – one ‘little cold’ that might cause a runny nose and cough for a typical kid, many times for him would mean an ER visit or even PICU stay.

And the last visit was serious. I remember sitting in the ER with him on that late-night trip in and he was smiling and laughing. He would look at me, smile and turn his head. As if saying, “here we are again.” Three days later he was intubated. Two days after that, gone.

I never ever ever expected Benjamin to NOT get better and come home – every other time before, he always made it home. And even in the dim PICU room this last time when his pulmonologist said to me he’s a really sick little boy, as if he knew what was coming and was preparing me, the worried yet hopeful mommy, with the tone of his voice – I still didn’t expect it.

Benjamin had lived through seven previous hospital visits, and yet he always came home. Just not this time.

Your world as you know it, crumbles. Your family life, changed forever. What are we supposed to do now?

What am I supposed to do NOW?

My answer to that question came as I was driving home one afternoon. I felt an odd feeling and the name Ben Smiles came to me. It was so odd that it made me catch my breath. It was so sudden and quick the only way I can explain it is a message from above.

Over the next couple of months, the phrase Ben Smiles evolved into Ben Smiles Memorial Foundation where we would give switch-adapted toys, switches and other devices to kids that were like Benjamin. We have given toy gifts to dozens of children so far. I have met several of them in person and I have seen their smiles.

I can spread joy with our gifts. And I can see my Benjamin in these kids and the hope and gratitude on the mothers’ faces. I can share him with others and continue to make him present in our lives. Even though he is gone, he is still here.

Ben’s Adventures Children’s Book is another way I have found to give tribute to him. I never thought I would become a children’s author, nor did I ever have any aspirations to do so.  But here I am, three years after his death, launching the second book in the Ben’s Adventures book series, about a young triplet brother with a disability. He loves his friends and family, has joy for life and uses his vivid imagination to create fun adventures. Ben shows that ALL kids can play & dream despite any physical or medical challenges they may have.

Today, I still can’t believe he’s not here.  It’s been three full years and it’s not gotten any easier. But I think of the lives we’ve touched because of his death.

I don’t do it for the praise from others or for the thank yous. I don’t do it to show that I am surviving and have found a way through this. But I do take every opportunity I can to talk about him and share him with others. It makes me happy to know that other families now know him. I love showing his beautiful face and his beautiful smile and talking about his strength. And I can smile when I see other kids smile. 

That is my way forward.

To learn more about Ben Smiles Memorial Foundation, visit

Ben’s Adventures is available at; the second book just launched for preorder on Kickstarter here.

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8 Comments on “Finding The Steps That Moved Me Forward”

  1. Thank you for sharing. Very inspiring. I got goosies when you said the name Ben smiles just came to you. As I have had similar experiences about book titles and keep feeling a little nudge to do something with it. I too hope to write a book or books about my boy. I am currently in a rough spot my family is moving out our house but having troubles finding a place. So I don’t feel I have time or energy but in the future its its something I aspire to do .
    Anyways thank you for the inspiration to move forward in these hard times we now live. My son Rainin 7 was also sick a year and half. He had cancer. Thanks again!

  2. My son 13years he died 5th of this month he had cancer but i can’t accept this situation i want my son back if not i want to go near my son i can’t believe i can’t live without my son

  3. Hello, Emily.
    I’m writing to you because I simply don’t know what else to do – I’m reaching out EVERYwhere in the hopes that something, someone, anything, anyone might be able to help me. My boy’s been gone for 3 years, now. I can’t take this pain. I CAN’T TAKE IT. I’m not going to make it, Emily, and my family’s not going to make it. That this has happened to our beloved boy has absolutely KNOCKED my family to its knees. We weep constantly. I can’t go an hour without sobbing unless medicated and then everything’s foggy and vague. We’re just not going to survive this. It’s broken us apart and I know we can’t repair it. I know we’ve got to try, but every day without my boy is just a f****** GRIND. It’s just a waiting game to finally be done with this agony! My heart CANNOT take it anymore, yet it betrays me and keeps beating. How can you even begin to answer this? I’m sorry … I just can’t hide behind decorum, anymore. I don’t have a shred of it left. I’m simply not going to make it and I know giving up can’t be the plan for me or the right path to take. But I see NO PATH and no reason to look for one. Believe me, I’ve tried forging them. “He wouldn’t want you to be like this” “He wouldn’t want you to suffer.” Well, neither do I! It’s not like I’m not TRYING! Some things aren’t a choice!
    Help. Anyone. I’m ready to try heroin I swear to God.

    1. Take it one day at a time. I would recommend seeking out a grief share group. Most communities have them, and they are free. It’s a great way to connect with people going through the same loss and get some support. I also have a closed Facebook group only for bereaved parents to share and connect with others that get it. It is called Living After Child Loss. – Navigating this loss is the hardest thing you will ever do, but you must keep going. The choice you have is to continue looking for ways to honor your son, to live for and with him (because I believe they are still here with us). Ask your son for a sign that he is still here. It’s not about moving on… it’s about moving forward with him still incorporated into your life.

  4. My son died three weeks ago. He is 17 and was swimming in the local river with a group of his friends. Well over 200 people came out to pay respects. As people came to the wake I realized I don’t need to hug every person that tries to hug me. Especially if I don’t like them. Its ok to be honest. When someone asks how you are doing I can say I’m a mess. Going out in public has been the hardest. I’m learning to stick out my hand to stop well meaning acqaintances. If someone asks what happened, I don’t feel bad saying it was an accidental drowning and leaving it at that. No need to give details. Repeating the story is the worst part when you don’t want to be grocery shopping anyways. My son was my world. I love him so much. By profession I work as a nurse. I’m trying to fall back on what I tell families. That’s not working. But your right. Grieving is selfish and I plan on being this way. I have also encouraged my husband. I am glad I found this page. Thank you

  5. My daughter Kaira died on 22dec 2019,she had cancer and this word haunt ed me like anything. I can’t take this, I don’t believe this everyone says it happened but it’s not that to accept this. Lifevis getting miserable day by day without her. I can’t think of surviving without her but the agony is I’m surviving I can’t do anything I can’t give up life don’t know what to do except crying n crying.

  6. My daughter, Amanda, was only 28. A new mother, married less than 2 yrs, never had a drink, never did drugs, very physically active, healthiest person you could meet,
    no heart conditions passed away unexpectedly at work from a cardiac disrythia. sand I can’t accept that this happens. I am so lost and empty that I find myself asking why? Why would God, whom I have decided is not there, would do this. I can not come to terms with it. It’s been several months and I cry all the time. She was my best friend and now I am alone. All I think about is suicide, can’t eat. Sleep, concentrate, work, etc. Where do you turn when everything we are taught is ripped away with no warning. How do you believe and keep faith after something like this. I feel why bother. Nothing matters and I don’t know that I can make it through this anymore. I want to be with her so bad and it hurts so bad. Why??????

  7. My daughter Francesca passed over April 11, 2020. She took a pill that was supposed to be Percocet. Turns out it was a lethal dose of fentanyl mixed with an animal tranquilizer called xylazine. There are an evil group of people manufacturing these pills that are pure poison. No one can survive taking them. I would like to create a group for all parents who have lost their children due to this epidemic. It is a problem that our children are not aware of. She was a sophomore at Texas state University and wanted to be a geologist and work in oil and gas. She was a vegetarian, she ran 3 miles a day, she had a beautiful smile and was the absolute life of the party and the light when she entered a room. She loved everyone and everyone loved her. She had no judgments. She has often been described as snow white. Sometimes I spend days in my bed and cannot get out to do anything. But I know she is with me and she is still alive. I want her to be proud of me, proud to be experiencing the lives of my other children and grandchildren and husband. Sometimes the pain is so raw and deep that I don’t know how to overcome it and I don’t know how to soften what I feel. She leaves me signs. She points me in directions and makes me find letters she wrote and pictures she drew and even a bracelet that she made that said always. That was our word for our love for each other, that it would always be. I wish and pray to God that this never happened, I used to pray every day to God that I never have to bury a child. But now that I’ve done that there can be nothing worse. And people who imagine what it might feel like to lose a child have no idea. They can imagine how bad it would be But in their very worst dream it’s 1000 times worse. I just don’t know how I’m going to live the rest of my life without my daughter.

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