Last weekend I attended a retreat for mothers whose children have died from congenital heart disease and other chronic illnesses. I didn't search out this retreat, you could say it found me and I said "Yes". The Restoring a Mother's Heart retreat is put on by the Ethan M. Lindberg Foundation, a foundation established by Jessica and Erik Lindberg to honor the life of their son, Ethan. Ethan was born with congenital heart disease and he died on June 12, 2012 at the age of seven. Jessica and Erik have four sons. Ethan is their oldest son. Last December, Jessica contacted me via Facebook to share with me that she had read my blog and was touched by Jack's story and understood the grief of living with the death of a child. Jessica also shared with me that her youngest son, Bodey, who is two years old, was born with a Congenital Muscular Dystrophy. I never asked Jessica how she found Jack's blog, but I'm guessing it was from the Cure CMD website. After Jessica and I connected via Facebook, I discovered the link to her Foundation and read every page on the website. I clicked on the tab titled "Retreat" and found these words:
During our time together we will encourage you to cultivate your infinite relationship with your child. We will ask our hearts' deep questions and share practical tools to navigate this journey. This retreat is an invitation to continue your infinite relationship with your child. As a participant, you will be reminded that your story, while painful, is certainly not over. And in fact, it has great purpose. Come share, learn, care for yourself and feel the support of a community of women who understand.
As soon as I read those words, my heart said "you need to do this."
The weekend was spent in the presence of beautiful mothers from all across the country. We shared our children with each other, we laughed, we cried, we meditated, we listened, we reflected, and we ate (a lot!) We were students and we were teachers. I came away from the weekend feeling validated and honored. I also came away with work to do. One of the messages that resounded with me is that while Jack's story may be over, mine is not. Three years after Jack's death and I still struggle with "who am I and what am I supposed to do with the rest of my life?" That's where I need to put in my work. I need to find and focus on my purpose and that's not easy when it doesn't include Jack - at least not in the way it included Jack for the 15 years of our lives together.
The speakers were all incredible and spoke from experience and with love. One of the speakers was Tom Zuba. Shortly after Jack died, I bought Tom's book Permission to Mourn. A New Way to Do Grief. When I first read it, I had a hard time connecting to his words. When I found out that Tom was speaking at the retreat, I pulled out the book and read it again. The second time around, so much of what Tom wrote resonated with me. I was in a much different place three months after Jack died than I am now - three years later. Tom has experienced incredible loss in his life and he knows of what he speaks. It was a privilege to listen and learn from him.
On the second day of the retreat, one of the sessions lead by Tom dealt with God (or Spirit or Light or whatever you may believe) and how He was present (or not) when our child died. The answers to this question were as varied as the experiences we each had surrounding our child's death. I came away from this session with my most profound take-away from the retreat.
When I think back over Jack's life, I don't think there was ever a time I was angry with God. In those first few months of Jack's life, I prayed fervently that Jack would be strong enough to get off the ventilator. When my prayers weren't answered, I wasn't angry, I was resigned. By the time Jack was born, I was well beyond Plan B for my life, so it wasn't a big surprise that I didn't get what I prayed for. I wasn't happy about the hand that Jack and I (and our family) had been dealt, but it never rose to the level of being angry with God. Instead, for the majority of Jack's life I decided that I'd just "take it from here" since God clearly wasn't going to help out (how very wrong I was in this belief!) I was under the illusion that I was in control and that I'd just have to get Jack walking, talking, eating and breathing without the damn ventilator all on my own. This illusion of control most certainly preserved my sanity. Then in 2012 Jack began suffering from kidney stones and the downward spiral began. I still had my "I'm in control" hat on as I navigated Jack's care and talked with doctors in St. Louis, doctors in Phoenix, former doctors, current doctors and made sure that Jack had the best care possible. But it wasn't enough. Jack continued to suffer and I couldn't stop it. I reached the point where I literally fell to my knees begging God for guidance and to release Jack from his pain. I never felt compelled to ask God to "fix" Jack because I knew it wasn't possible. Jack was born with a devastating neuromuscular disease, he wasn't going to get better. I needed God's guidance as Mark and I made the most difficult decisions any parents should have to make for their child. I believe that those difficult decisions were God-driven decisions. Jack was suffering and when he died I felt with all my heart that God was with us every step of the way.
When I shared my thoughts on this question as it pertained to my experiences with Jack, I heard the words "you loved him home." Those words touched me to my core. Yes, with God's grace and guidance, I did love Jack Home. Three years after Jack died, I finally heard the words that give me peace. I didn't choose to let Jack die; I chose to LOVE HIM HOME.
Thank you Jessica. Thank you Tom, Lexi and Sara. And thank you to each and every brave mother who had the courage to show up and share her heart, her words, her pain and her love. Our stories are not over. Indeed, they are not.