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After Ethan died I lived in a wilderness. I was overcome with grief as I tried to assimilate back into life outside the hospital. I was faced with terrible guilt, lonliness, and filled with questions about Ethan's medical course, life, God, you name it I questioned it. My whole life and everything I believed had been turned on it's head. I literally felt like I was crawling through cement. Barely moving. Sure I'd never see the light of life again.
About 8 months after Ethan died I was checking my email. I had never read the emails people sent around the time of his death. This day I was searching for a certain email. I found the one I was looking for, but I also found another one from one of Ethan's teachers. Her daughter had been in school with a boy named Rory who died of brain cancer. Rory's dad had a blog which she forwarded to me. I read these words "the death of someone you love is meant to crack you open". These words were a lifeline to me. That's how I felt. Totally. Cracked. Open. I knew I had to meet the person that wrote those words.
For the next 18 months my husband Erik and I spent every Tuesday night with Tom Zuba. We asked our questions, told our story over and over again. You see Tom listened because his wife and two of his three children had died from three separate medical instances. I learned that it was okay to ask all the hard scary questions. I had a safe place to tell my story, to cry, to scream. We acknowledged that Erik and I mourned differently. We created practical strategies to get through specific days and events. I learned I did not have to crawl through the cement, but that I could actually find purpose in Ethan's death. I learned that I was born to be radiant. That my life actually had purpose.
I learned and believe with all I am that my relationship with Ethan, my love for Ethan continues on. On and on. Our love, our souls are intertwined for all eternity.
This was hard hard work. Hard work. It still is many days. I now want to give other mothers (and someday fathers) a chance to experience the healing I have. Restoring a Mother's Heart brings together moms of children who have died from congenital heart disease and other chronic illnesses in a physical space to learn and share, to support each other, and to find purpose.
The love we share with our children is eternal. It's never ending. It continues on and on. This love and our grief can be a great teacher, a transformer if we let it. The path is difficult, but the gifts many. My life is proof.
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Love On Manifesto
We believe. We believe and know that the love we have for our children
who have died has a depth with no end, an expanse with no width.
It spans time, space, life and death.
This love is our very real and tangible connection to our children.
It's because of this fierce love that we know our children, now in spirit, are with us.
This love invites us and gathers us into a continuous relationship with them.
Our children are present, pushing us, guiding us, and helping us find our way.
Because we have faced the death of our beloved children, we awaken to see more.
Our stories are our strength. So we walk with purpose. We will make our days count.
We will morn, cry, miss, laugh, love and do. We will create goodness.
We will contribute to this world in a way that only we can.
We are mothers of beautiful, beloved children. These souls, our children, shine bright.
Therefore we will shine bright too. We will walk in light. We will spread love.
Our pain will be a lamp of compassion for others. We will hold this lamp of love high.
Some days it's but an ember. Some days a wild flame.
Through it all, we love on. We believe."