Grief and Hope

I've been thinking a lot about how grief and hope are intertwined. Especially as I’ve been reading the words written by moms who are deep in the trenches of long-term caregiving for their children with medical/special needs and by moms who are living with the recent deaths of their children. I was and am those moms.

After Jack died, I read every book and article I could find on surviving the death of a child. The prevailing themes centered on the journey through grief, healing after loss, and how to grow from the experience and find joy and purpose in life again. All of which are valuable resources, but the more I read about grief after death, the more I realized that these books and articles didn’t tell me anything I didn’t already know. The fact is, grief wasn't new to me. I had fifteen years of loss and grief experience under my belt leading up to January 5, 2014.

I grieved from the moment Jack was born seven weeks early. I grieved the loss of a healthy baby as Jack spent the majority of the first seven months of his life in intensive care, intubated, undergoing multiple surgeries, failed attempts at weaning from the ventilator, his body invaded with chest tubes, arterial lines, NG tubes, and IVs. I grieved the loss of the family and life I expected (and wanted!) when I brought my seven-month old son home from the hospital with a trach, attached to a ventilator and a feeding tube inserted into his stomach. I grieved the loss of privacy when I had to invite nurses into my home to help care for Jack. I grieved the loss of my dreams of a star athlete with the diagnosis of congenital muscular dystrophy, with the addition of PT, OT, and special education services, when his first wheelchair was ordered. I grieved the start and end of every school year knowing that Jack would never attend school with his siblings, graduate high school or college. I grieved the loss of conversations with my son as I accepted that he would never speak the words his mind so clearly held. I grieved for all Jack had to endure with every surgery, procedure and hospital admission. I grieved from frustration and helplessness with every conflict with medical professionals, DME companies, insurance companies, and nursing agencies. I carried the burden of anticipatory grief after I signed the hospice admission form. I've had to pick myself up and carry on in the face of grief time and time and time again. Before Jack died, I knew grief. I was a freaking grief expert.

Yet despite the undercurrent of grief, life was filled with so much love and joy and purpose. The foundation of this love and joy and purpose was HOPE. Because Jack lived, there was always hope. Because Jack lived, there always existed the possibility that tomorrow could be a better day. Jack deserved for tomorrow to be a better day. He gave me the strength and intention to go to bed each night with hope and the resolve to do everything I could to make tomorrow a better day. 

But after Jack died, grief was different. I not only grieved the loss of Jack, I grieved the loss of hope.

Over the last five years, I’ve had to rediscover hope in a life without Jack. These last five years have taken me on a spiritual journey like I’ve never experienced before (and continue to experience). To quote one of my favorite teachers, Fr. Richard Rohr, “Grief is a privileged portal into soul work and transformation.”

I’ve always believed in God. But I was raised to believe in a God to be feared; a God who required me to earn my way to heaven. Today, the God I know, the God who gives me hope, the God who has my son, is a loving God, not a God to be feared. My God doesn’t demand that I earn the right to see my son again. 

It's taken a lot of reading, a lot of praying, a lot of reflecting, and a lot of trusting to get where I am today. But today, in the midst of my grief, I again have HOPE. I survive and thrive and love and find joy and purpose in life because I know with every fiber of my being that Jack’s spirit lives on, that he is okay, and that with the setting of each day here on earth, I am one day closer to being with him again. Absolutely and unconditionally. 

Grief is still a part of my life. And so, too, is Hope. 

Onward.