This week as we passed the mark of having now lived four months without our precious Max, I started to think about my own emotional journey in that time. I began to jot some thoughts down under the heading of ‘lessons learned 4 months into my journey with grief’. As I started to think about it though, I realized that I am far more than 4 months into that journey. Although grief has become a frequently spoken word now in my life and while it obviously has assumed a far more central role, Grief is actually a familiar character in my life. Emotions are very difficult to conceptualize and adequately portray with mere words. We would like to teach Addie to communicate emotions through her iPad app, but it is very hard to teach her to recognize and label such abstract experiences. Likewise, it would be easy for me to tell you Max and Addie’s story as a timeline or to explain these past few months as a list of events and milestones. However, to do so would reduce a profoundly complex journey that is inherently filled with intense, conflicting, and ultimately complementary emotions. I find the best way to bring that story to life is really to personify the emotions themselves. In a very Inside Out-esque mindset, I visualize the key emotions as characters interacting on some sort of stage, producing an evolving story. At this point four months in, I wanted to share a little about the two most prominent characters in my story- Grief and Joy. It sounds like they would be at odds, constantly competing to be the lead character. What I have found instead, though, is that Grief and Joy actually complement and enrich one another and are dancing gracefully together through each day of these chapters of my life.
When I was reflecting on Grief and what I believe to be true about his role in my life, I was trying to determine when Grief first joined the ensemble chorus of my life. Grief obviously began before the morning we lost Max since we found out 12 days before that morning that Max’s labs were so bad and his medical problems so multi-faceted and dire that nothing more could be done to help him. We began grieving losing Max even while he was still with us, which was a heartbreaking and complicated experience. I could rewind a bit further and identify that Grief had really been residing with us since March when Max spent 5 weeks in the hospital following a septic infection and never really rebounded. We began working with palliative care and hospice when he did come home because his heath took such a sharp decline. Processing what the loss of his tenuous stability meant for our present and our future filled us with Grief. But, truly I believe that Grief made its debut in my story 6 years ago. 6 years ago when a neurologist held up pictures of Max’s brain MRI scans and began every sentence with ‘your son will never’. We received (and that is the wrong word because truly it was thrust at us) Max’s diagnosis 6 years ago and while the absolute details of what it really meant were fuzzy, the gist was that Max’s life was going to be short and full of challenges. I was so unprepared, so consumed in the hopes and dreams I had clung to for my children (even in the face of a full year at that point of huge medical obstacles), that I hardly recognized that it was Grief entering my life. Living with loss from death, people readily label Grief. But, in those moments then, processing instead a loss of dreams and potential, I did not even identify the feeling initially. Was it Despair or Depression? At times confused for maybe just Anger and Jealousy? Was it an extension of Fear or nothing more than Sadness, a known feeling but in a new potency? It took me a while before I realized it was Grief. I was grieving the life I had planned for Max. I was grieving the health and happiness I had wanted for him and felt he deserved. I was grieving the future, that now looked bleak instead of shiny and hopeful.
I’m sharing my initial experiences with Grief because while this current pain following losing Max is new and acute and decidedly different and more profound and permanent, a lot of the lessons I learned 6 years ago walking with Grief remain true now. More than a full year after Max’s diagnosis, I finally wrote a blog post really sharing how hard it had been for me to process his diagnosis and the sadness I was feeling daily, even while he continued to be so smiley and bring us so much joy. The conclusion I came to in my blog post was that “heartache and hope are not mutually exclusive and that joy and sadness can co-exist in the same second.” My very first year of knowing Grief had taught me what I still believe is the most important lesson for me right now- that Grief and Joy can dance together through our lives and that their melody can actually be profoundly beautiful. During the nearly 6 years between Max’s diagnosis and departure, I truly learned that Grief does not negate Gratitute, Happiness or Joy. We loved and enjoyed and treasured Max richly. Anyone who knew Max knows that his life was a Symphony of Joy! To love Max was to be filled with profound, atypical Appreciation and Delight. And yet, when he would be admitted to the hospital and Fear would return, so would Grief. When milestones were missed and life stages served as reminders of what could have been, Grief was present. I learned not to feel ashamed of, or angry with, Grief’s recurrent presence. I learned that I could Grieve for what Max had to endured and what he missed out on, and at the same time Rejoice in the blessings in and through his life. Mothering Max was the greatest Joy, but mothering Max meant accepting Grief as well. Acknowledging that the two emotions could co-exist was a crucial lesson then- and an equally crucial one now.
Looking now at the last 4 months, since that dreadful morning when we kissed Max goodbye, I see that Grief and Joy have been hand in hand waltzing through each moment of these days. There is no denying that in the initial periods after our loss, it felt like a one-man Grief show that seemed to block all else out. Yet even in the worst moments, Joy broke through… in Addie’s oblivious enjoyment of having all her grandparents around all the time, when Hannah flew out from Australia to spend 6 days with me, when friends and nurses I had not seen in years showed up at Max’s service to hug us- during Grief’s solo acts, Joy bravely danced across the stage. And instinctively it would feel almost wrong. “This is not your time Joy! We just lost Max, this moment belongs only to Grief,” shouted Guilt from the sidelines. But we determined to dismiss Guilt and embrace Joy’s much needed appearances. Joy never removed Grief, but she softened him. The light of Joy made even the dance of Grief its own form of beauty. We tend to view Grief as ugly or dark of undesirable but when Joy danced through, we remembered that Grief is the close brother of Love. Grief sang because Love had exuded so fully through Max. Joy reminded us of the resemblance of Grief to Love. Joy enabled us to endure Grief’s most overwhelming melodies. We could be present with Grief because the glimpses of Joy during that time offered respite, promised the intensity would be temporary and helped us view Grief through the lens of Love.
As the initial days after losing Max turned into weeks and then months, we began to see Joy and Grief co-existing in a constant duet. Both always present and intertwined, neither stealing the show from the other or removing their own individual significance. Someone asks ‘how old are your kids?’ and Grief answers “I have 7 year old twins but recently lost my son” and Joy chimes in “but Addie is amazing and Max is running in Heaven”. We go on our first outings just the three of us and Joy says “it feels wonderful to see how happy Addie is right now” while Grief whispers back “I sure wish Max was here”. Every happy experience carries the reminder that Max was not here for it, and every sad day is lightened by the memories of his smile and our confidence of his bliss in Heaven. During celebrations, during challenges- Grief and Joy are both there, front and center, loud and clear. Just as Guilt tried to tell Joy she was not welcome during Grief’s dominating hours, Guilt sometimes tries to shoo away Grief now. Guilt says ‘You have worn out your welcome, this is Joy’s moment. It’s their birthday! It’s Christmas! Today belongs only to Joy”. But, we once again dismiss Guilt. For just as there was room for Joy in our greatest moments of Grief, there is room for Grief in Joy’s hours. Because truly for me, Grief and Joy dance most beautifully together. Similar to how Joy reminded us that Grief is Love, Grief reminds us that the greatest Joy lies in heaven and not here. Grief allows us to remember our past and future blessings while Joy sustains us in the present. It is when Joy can dance with Grief that it is so much more than fleeting happiness- Joy becomes a resilient celebration of all aspects of life on earth and eternal.
Joy and Grief are also not dancing alone. The other partners gracefully twirl around them. Pain and Peace link arms and together show that we can mourn that we miss Max but rest assured he is completely healed now. Sorrow and Solace acknowledge that this is a pain no parent should face but remind us that we do not face it alone, but rather surrounded by love and support. Hurt and Hope accept that the very real human ache of loss is valid but that the promise that we will see Max again is what matters most. This chorus of opposites, the dance of dichotomies, is the melody of my life right now. And to have a moment of complete honesty here- this is not the story I would have chosen for my life. Left to my design, Joy, Happiness, Hope, Peace and Laughter would be the only players, doing one Conga Line after another! If I was writing my own story, it would be cheesy, sloppy acts of giddiness. But, I am not the author of the story of my life and I recognize that God is telling a more beautiful story. We all know instinctively that the greatest stories always have heartache mixed in with happiness. Untested happiness lacks the grace and strength of weathered Joy. The full cast of my life is what gives it true beauty and what will enable it to continue tell the richest story.
These are my thoughts 4 months after our loss. I know the dances will adjust and the songs will shift. I hope Joy gets more solo moments and I expect that she will. Grief will probably spend longer periods singing in the background chorus and I know that will be a welcomed change too. I also know Grief is not going away for good and that it will parade through front and center at times when I don’t expect it. And I am completely okay with that. I am not trying to ‘work through’ or ‘get over’ Grief. I am living with Grief. As one of the many real amazing characters or expressions of emotion in my life. Grief resembles Love to me and Grief dances with Joy and brings greater meaning and beauty to her dance. My life story is unfolding exactly as God intended, including my daily waltzes with Grief and Joy.