The last week has shaken me. Two families I’ve gotten to know through my work with Ethan M. Lindberg Foundation have had to say goodbye for now to their baby girls. Another family is getting closer to this reality. I feel the heaviness in my bones. I’m transported to the early days after Ethan died. As I watch these families I feel a sense of guilt, as if I’m the keeper of a terrible secret. That the death of their child will tear them apart in a way they can never imagine, that no one can prepare them for. This death will turn everything on its head. They will then spend the next years of their life putting things back together. Making sense of something that can never make sense.
Next to the reminder of fresh, unbelievable grief sits hope. I can have hope for these families because I, once again, have it in my life. In fact, I smile as I think of all the incredible things they will do and become in the coming years to as they honor their child. I hope they will hear and accept this invitation to become, to learn and to grow. That’s what it is, an invitation to see with new eyes this journey called life.
A path to healing requires a lot of hard work. There’s no way around it. Though this path may seem daunting, it’s lit with hope. As you make a conscious commitment to healing, to walking through – not around – you will find helpers along the way. You will see light. You will feel the presence of love, of God in nooks and crannies you never thought possible. You will receive renewed energy for the journey. This supply of hope may come in tiny doses at first. But as you say “yes” to life, you’ll receive more, “yes” again more will come. Until you sit in an open space where hope is all around you.
Death and grief have been my greatest teachers. Ethan and his life have propelled me to live and love again in deep deep ways. Ethan sits right in the middle of my work, of my passion, of my purpose.
Today I’m sharing 7 things, 7 actions steps that have helped me learn to live with the death of Ethan. This healing process will be life long. It will only be complete when I see Ethan again. In the meantime, I have a lot of work to do. I am healing. Our family is healing. We are looking at a future now. We are hoping for things again. All the while Ethan is part of this, his life weaving in and connecting his story, his purpose and ours.
I hope that whatever you are facing in your life, you may find some wisdom for your journey in these 7 steps, some hope in the crevice, some glimmer of light in the dark spaces.
#1 Ask the deepest questions of your heart.
My path to healing started the day I started to ask the deepest questions of my heart.
“The death of someone you love cracks you open…it’s meant to.” When I read this something in me completely shifted. This was it. I had been cracked open completely. Open, vulnerable, injured. And then the questions came, like the really scary ones I didn’t want to say out loud like- Does prayer work? Did God love me? Did he love Ethan? Did he not see the days, the nights, the complete and utter exhaustion, the research I did, the reading I did, the questions I asked? Did he not hear the prayers that came from me kneeling on the floor in the hospital bathroom and beside my bed begging for mercy and healing? Does God say NO? Did Ethan have a certain number of days? Do I? What is Heaven? We hear about it in church, and we sing about it, but what is it? Where is it? Is God sovereign? What does that even mean? Did God take Ethan from me? I used to cry the ugliest cry possible and say to God “How dare you let my family and my son endure all that and then let him die…how dare you.” Is there even a God? What is prayer? People say God is good when their child does well or when things go well. Is God “good” when your child dies? What happens when you die? What’s that experience like? Is Ethan okay? These questions and many more took me to the complete end of myself. I had to answer all of these questions. I had to entertain all of them. I had to ask them. Say them. Ask them. Slowly, I’ve answered them. I’ve worked through them. I now know that through all of it, we were held. Ethan was held. God’s love was right there in the middle of the pain. Right smack in the middle of all of it. There is tremendous purpose in what we endured and I learn more about that each day.
Allow yourself to ask these fundamental questions. Ask them, read about them, sit quietly with them, converse with others about them. Find an answer. Don’t be afraid to ask. The day I started asking these questions was the day my healing began.
#2 Decide to live.
Here’s the real question I needed to answer. Did I want to live? After Ethan died, I wanted to die. We flew home from Boston together as a family, Ethan’s body was on the plane. It was a bumpy flight. Typically a nervous flyer, I did not care if the plane crashed. Part of me wanted it to. We could all go together and this terrible pain could be over.
I came home after living away in the hospital for 13 months with 2 of my 3 boys. They needed me. They needed diapers changed and food on the table, I had to wash their clothes and get them to school. I don’t remember that first year very well. But I know that at some point I decided I wanted to live. That in fact there was much to live for. I received so many signs from Ethan. I came to know in a deep way that some way somehow there would be purpose in all of it, and I was going to make damn sure that all of it mattered.
#3 Find a safe place to tell your story over, and over, and over again. Get it out.
You have to get it up and out, up and out, up and out. I told Ethan’s story over and over. I told it in different ways. I shared my regrets, my anger, the little nuances of it that I never shared with anyone. Every Tuesday night for 18 months my husband Erik and I sat in Tom Zuba’s living room getting our story out. Diving deep into our feelings, our regret, our pain. Diving head first right into the ugliest parts. Right into the middle of it. Over and over again. Until we didn’t need to dive as deeply or as frequently.
The only way is through. Find a life coach, a counselor, a pastor, a friend who will dive with you. Who will listen. Who will encourage you to tell your story, your child’s story over and over until you can’t tell it anymore because you’ve found some peace. You will always need to share your story, but there will come a time when the need lessens and acceptance starts to creep in.
#4 Investigate Heaven.
I had spent my whole life going to church listening to people talk about Heaven. We sing about it. We say we believe in it. We say that we are going there. But when the rubber meets the road, when it’s your child, you really want to know if it’s real. I read every book I could get my hands on.
One night shortly after we returned from Boston I was reading a book about a near death experience by Dr. Mary Neal called To Heaven and Back. Blake was sleeping next to me. I read an expert where she shares her experience of entering Heaven. She said everyone was cheering for her and welcoming her Home. I closed the book and went to sleep. The next morning when we woke up Blake said to me, “Mom I had a dream about Ethan”. I was longing for a dream about Ethan, so I eagerly hung on every word that came from my 3 ½ year old’s mouth. All he said was “Ethan was happy and the guys were cheering for him”. I asked again he responded the same “the guys were cheering for him”. For me this shook me. I had closed the night before with that story from Mary Neal about the cheers she received as she entered Heaven. This experience was very significant for me. I have had many other signs since. Each one points me to a place of perfect love, of wholeness, of peace in the presence of our Creator. I know that is where Ethan resides. In perfect love.
#5 Exercise. Get It Out.
The repetitive nature of running was such gift to me. The pattern of one foot then another, right then left, soothed my brain. It was nearly meditative. I used to run and cry. When I struggled to breathe as I ran up a hill, I would nearly fall to the ground. All I could think was how Ethan struggled to breathe. How I restricted his water intake. I participated in that. I ran through my guilt, my grief, my anger. I heard Ethan’s voice in my head - I love you mom. I love you mom. I love you mom. I ran and ran. One day I was at a boot camp class at the gym. At the end of class we ran sprints. The instructor told us to think of something you are angry about and run it out. I dusted everyone in the class.
That physical work actually strengthened my mind and my spirit. I became keenly aware of the mind, body, spirit connection. Now, when I’m feeling weak in my spirit, it’s often when I’m not taking very good care of my physical body. Get out there, work it out, run it out, lift it out, yoga it out. Move your body. It will lift your spirit. Get outside, feel the cold air on your face. Feel the love of your child, of your God breathing into your face. Feel your heart pounding. You are alive and the world needs you.
#6 Deal with the trauma.
I witnessed tremendous trauma the last year of Ethan’s life. It seeped into my bones. I still struggle with physical pain that I never did prior to the last year of his life. I know it’s emotional and physical on many levels. The last 24 hours of Ethan’s life was horrific. I saw things done to my child that most of you could never imagine. The blood, the smell of the room, the beeps. It was horrifying. After I got home it played over and over again in my mind. Those visions tortured me. It was like someone hit replay over and over and over again. I would get up in the middle of the night with Chase, who was a baby at the time, and I sat in the darkness holding him, watching these movies in my head.
I read a book by a man named Alan Botkin. He had worked with Vietnam Vets in Chicago. I loved his work and I decided I needed to find him. I did. I spent a weekend going through his EMDR method. It was incredibly emotional. It was transformational. I felt like a huge weight had been lifted. My mind felt lighter. I was able to press stop instead of being subjected to continuous replay.
I now think that parents who have witnessed medical trauma, or the traumatic death of their child should consider EMDR. Really anyone who has experienced trauma would benefit from it. This tool enabled me to move through the horrible details of Ethan’s death. It helped me let go of some of the guilt around those last hours.
If you are suffering from trauma, consider this tool as a way to help your mind process what you have witnessed.
#7 Learn to Listen.
I am a doer. I get things done. Historically, I’ve had a tendency to strong arm things into being the way I want them to be. I rarely take no for an answer. I’m an idealist. Good or bad, that’s me. So when Ethan died and there was nothing I could “do”. No action I could take to change the outcome, I was paralyzed. It took me a long time (and I’m still learning), but I started listening, to life, to God. I started observing. I started accepting. I contemplated surrender. I contemplated forgiveness.
Now I listen first. I observe. I approach things more peacefully. I watch them unfold. I surrender to what life is instead of what I want it to be. Some days I excel at this new-found approach to life, some days I fail miserably. But I try. This new approach helps me to accept what life hands me. It helps me to see the gifts in all things, all circumstances. I know there is love and purpose and life weaving in and though my life at every minute. I’m a student of this life. I’m learning, growing, figuring it out.
Finding peace through tragedy is hard. The practical steps that are actually are helpful is often harder to find. The journey of these 3 + years has granted me many gifts in and through these 7 steps. I hope you will find some gifts here too. Your path is lit by hope. It's all around you. Just take one step, then another, then another and look for the helpers along the way.