Today has been creeping up on me.
I’ve felt it approaching for weeks.
Five years feels like a milestone.
Five years feels like the blink of an eye and an eternity all at once.
Five years ago my Ethan left his physical body and returned home. He returned home to God, to wholeness, to perfection.
I miss him. God, I miss him. I see him in Chase’s laughter, in the way Blake loves to organize a crowd. I see him in Bodey’s face. I see him in his friends as I watch them grow. I long to touch him, kiss him, hear his voice, feel his energy and hear him say "I love you mom". I long to hold his hand like we would do as he fell asleep each night. I long to hear his blasting music, and about his next great idea.
The evolution of time is a strange thing. As this five year mark inched closer, I wondered if many people remember. I wondered if they think we should be over it, over Ethan’s death and beyond all this personal reflection. I wondered if I’m supposed to feel a certain way or act in a certain manner.
After our child dies, or anyone that we love deeply, we think about their legacy. We want them to be remembered and honored. We want their story to mean something and to make a lasting impact on this busy, evolving world. When their death comes because of illness, or an accident, or suicide or disaster we often work to change the way people behave. We want to cure the disease, combat the behavior, and make people aware so it does not happen again.
So much good can and does come out of death, if we choose. But I wonder if that work is the totality of what their death invites us to do.
Many many people kindly say the Ethan Lindberg Foundation is a wonderful legacy for Ethan. They suggest I must be so proud of the way it honors Ethan. Lately, this compliment leaves me flustered.
I am certainly proud of the way it has grown and the work we do. The foundation honors our story, the stories of so many families we’ve met, and seeks to recalibrate the way we care for families with congenital heart disease. But since Ethan’s identity is not just his heart disease, his legacy, for me is not just about this work. Yes, it’s work I feel deeply called to. It’s work that employs my talents, but it’s not the totality of Ethan’s legacy.
I talk to Ethan sometimes. I ask him things. It may sound strange to you, but I do get an answer. Whatever comes to me immediately after asking my question is my answer. It comes through a deep inner knowing I have developed in the last 5 years. Recently, in my exhaustion, I asked Ethan “how can I best honor you?”
The answer was unexpected. I heard “be your best self”. I did not hear grow the foundation or raise this much money or eradicate that heart disease. I heard “be your best self”. Where I am today, this answer makes sense to me.
We absolutely should use our stories to make change. Some of the greatest change comes from the deepest pain. But I suggest our impact will be greater when we first focus on our inner life. Our external success will derive from the inside work we do.
Our children who have died love us deeply. They are saturated in the presence of God’s all encompassing love, which is bigger and wider than our human minds can comprehend. Because of this Big Love, they want us to be the fullest expression of who we are and of what we are created to be. They want us to become all that our stories invite us to become. They want us to stop hitting the snooze button, and to begin cultivating our best selves.
We cannot do this when we are waging war with life.
We cannot do this when we are focused on waging war with disease or circumstance.
Yes, we can make change and we should. That is part of the invitation.
But if we see making external change in the world the totality of our work, and miss the inner change we are being invited to, we miss the scope of the invitation.
This invitation asks us to stop numbing ourselves. It asks us to stop racing around to do one more thing and to start seeing ourselves for who we are. Fully loved. Created on purpose and for purpose by a God who intimately loves us. Yes, even though our child has died, and often much to our dismay, we have purpose and we are loved. I even suggest the amplitude of our purpose is actually hidden in their death.
As I’ve reconstructed my faith from outright shambles (more on that to come), I’ve found a kindred spirit in Richard Rohr. Ironically, my dad read his books, listened to his cassette tapes (yes in the 80’s) and received spiritual direction from one of Rohr’s colleagues way back when. Almost daily, I read his blog. Many days, God speaks to me through his words.
My transformation is in flux. I’m still learning, becoming, and figuring. I’m listening and growing. I pray for the courage to keep being transformed until I too leave my physical body and return home.
This is your call too. To be your best self. To transform yourself from the inside out. The death of our child(ren) is a cataclysmic event and life-shifting invitation. Part of this invitation is to make changes in this world because of your story. But if you don’t transform yourself, you are missing the totality of your calling.
It feels strange to do things you love. You push away joy or fulfillment because you are experiencing such deep pain. But hear this, you are being invited to love yourself and experience joy and fulfillment.
What have you been longing to do?
What dream have you been putting off?
What talent have you neglected to nurture?
I promise you, in saying yes to joy and fulfillment, you will find yourself and your child. You will find God. You will find purpose.
I know for sure that by loving myself and being the best Jessica I can is exactly what Ethan wants for me. Am I good at this? Not always. But today I'm recommitting myself to this venture. Will you join me? Your loved one wants this for you too.
As time passes, our family moves forward with Ethan. We do not move away from him. He travels through life with us. We will walk our days well. We will honor Ethan with our work. We will strive for change and impact. But we will honor him most, by working each day to be our best selves. We thank you Ethan for the wisdom your life keeps giving. We await the day we stand in fullness of God's love with you.
We love you.