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. 

Dear Jack

Dear Jack,

How is it possible that five years have passed since I held you in my arms as your heart sounded its final beat? How is it possible that my heart has continued to beat the last 1,825 days? Time feels so different since you died. Yes, years come and go and can be counted, but time feels oddly stationary. As if it’s incomprehensible that life could continue on without you. When I think back to something that happened in the past and want to assign “years since,” I have to remind myself to add the number of years since January 5, 2014 to my starting point. That first year after you died, I was hyper-focused on the passage of time. Each day, week, and month wasn’t solely a measure of how long you’d been gone, but a measure of another day, week, and month that I survived without you. And survived, I have.

Someone recently shared information with me about an online support group for parents of children with special needs who have died. While I appreciated that she reached out to me, my response was, “I’m doing okay.” Admitting that I’m doing okay since you died carries an element of risk. I risk that people will interpret my healing to mean that I’m no longer grieving, that I have “moved on,” that they don’t need to ask how I’m doing, or say your name. I will always grieve your absence, Jack. I miss you so much I ache. I will always appreciate when people ask me how I’m doing and I love hearing your name. I will forever wear the blanket of grief. Some days it weighs heavier than others. 

But my sweet boy, I am doing okay. I’m doing okay because I know without a doubt that you are okay. Your last heartbeat on earth was immediately followed by your first soulbeat in heaven. Your spirit soared and lives on. I know this. On those days when I need to hear from you, I simply ask and you answer. I hear you in the clouds, on the trail, in every perfectly timed text message, email, and card I receive. Rumi reminds us that “There is a voice that doesn’t use words. Listen.” That is as much true now as it was during your lifetime. You taught me to listen to the voice in your eyes. I use what you taught me to listen for you now. 

Over the last five years, I’ve slowly converted your room into my space. The room that was always filled with people, commotion, joy, and enormous love has become a quiet, peaceful place. Love still permeates the air. When I sit on the couch where your bed once was, I envision the room through your eyes. I smile. I cry. I feel your presence. While much of your room has changed, some things remain untouched. The last videos you watched still sit on top of the DVD player. The monitor sits on the floor, still plugged in. 

           

I’ve given away or tossed most of your equipment and supplies. But there are some things that remain. Your wheelchair sits parked in your shower along with your Ryan House bin that still holds everything we left Ryan House with when we left without you. Your bedside dresser holds fifteen years worth of your glasses. I feel no compulsion to get rid of these things. They are sacred to me. The pants you were wearing when you died are carefully folded in your dresser drawer, still holding the faintest scent of you. On those days when I ache to hold you, I pull the pants out of the drawer, hold them close to my face and draw in your scent. And I sob.

One of the greatest gifts you left me with is my circle of friends. They are why I can keep on keeping on. The people who supported us throughout your life are still here, supporting me. My sorority sisters, your nurses, your doctors, and so many others who cared for us during your lifetime. Even though I'm no longer in the trenches caring for you, I haven't been abandoned. It's so hard to be on the outside looking in. But our people continue to embrace me. Who would have guessed that I'd hike the Grand Canyon with two of your nurses and other moms I met because they have kids like you. Who would have guessed that I'd find myself in your neurologist's kitchen eating breakfast, that she made me! Or that I'd be writing a book with another one of your doctors. Even in your absence, you continue to widen my circle of friends as I meet and walk with other parents whose children have died. You touched people Jack and because of your incredible reach, I am surviving.

As I try to wrap up this note of meandering thoughts, I recognize that I’m really writing this to myself. I need to hear these words, you do not. Perhaps that’s the hardest part about this journey -  knowing that you no longer need me. You live on without your mom. That’s a hard one. Equally as hard is that I must live on without you. A few months ago, I read these words and they really spoke to me: “Nobody can will their heart to beat even once. Every heartbeat is a gift from God and means he’s not done with you yet.”

Five years ago, my beautiful son, you finished your work here on earth and your heart stopped beating. You have been released to your heavenly Home. My heart still beats. I have more work to do. You changed me, Jack. Who I am and all I do is because you lived. My work is really “our” work. You light my way. Sustained by your indomitable spirit, guided by your light, and with an eye always towards the day I get to be with you again, I will continue to grieve, I will continue to say your name, I will continue to do our work, and I will continue to push Onward. 

And I will be okay. 

I love you. I miss you. I am thankful for the fifteen years I had you. 

xoxo 
Mom