Here With Me Still

She taught me the vital importance of forgetting; and that sometimes it’s only our commitment to remembering that prevents us from accepting the love and peace that surrounds us. Robert Leleux

For the longest time, all I could remember were Jimmy’s lasts. Our final walk in the neighborhood. The day he could no longer climb the stairs to his bedroom. The insertion of the catheter, knowing it would only be removed after he stopped breathing. The painful pressure in his head as the cancer grew, no longer controllable by anything by Dilaudid, a powerful narcotic. His confusion toward the end, which stole him from us before death did. The silence after he stopped speaking.

After Jimmy died, thinking of my son meant finding myself in the worst of his days and all the misery he endured. The ever-present moments of grace and beauty were harder to conjure and hang on to – his high school friends and our chosen family dropping everything to be with him, to be with us. The laughter. The silliness. The gray winter afternoons when time slowed, and I could fool myself into thinking we had more … more days together, more memories to make, more confidences to exchange.

As my husband Dan began creating a slideshow of Jimmy’s 21 years of life for the memorial service, it fell to me to choose and scan the photos of Jimmy as a baby, toddler and little boy. As I paged through our photos albums, I felt as though I was looking at someone else’s happy life. Too raw and broken to let myself remember, too numb to acknowledge all that was now lost forever.

Jimmy’s eight year brain cancer journey taught me to live in the moment, grab hold of the people I love most and clutch even the smallest moments of joy, knowing how ephemeral they are. After his death, those memories became weapons, jagged reminders of what we’d had; who we’d been and what was missing. Whenever I let myself think of Jimmy, what came flooding back were the scary, hard days – when Jimmy lost his balance and fell, hitting his head on the kitchen counter. His Christmas Day seizure in the middle of opening a present. The last MRI, knowing even as I sat there next to him what it would reveal. Each vision worse than the next, piling on top of each other until I was drowning in painful images, too overcome with grief and regret to find my way back to solid ground. To survive, I closed myself off, forcing any memory of Jimmy out of my head each time one popped up, unbidden and unwanted.

I don’t remember exactly when the sweet memories began to return. Slowly at first, then more rapidly like the images from the window of a moving train. Jimmy at nine months, tirelessly stacking bright, primary-colored cups. The sound of his belly laugh as he drew back his arm and knocked the tower down. Spine straight, wavy hair sticking out in all directions, chubby thighs bursting out of his onesie. Three-year-old Jimmy perched on a low stone wall in front of Hoover Tower, wearing a Stanford t-shirt, red sweatpants and red canvas high tops. Arms outstretched, both thumbs up, a look of joy on his face. Excited to attend the football game that would cease to hold his attention within moments after it started. Hitting a baseball, catching a pass, shooting a basket, blocking a shot on goal. Long walks and conversations .. some of the most precious memories of all.

It is the ordinary moments I miss most. The flash of his smile, The light of engagement in his eyes. The way he gave his full attention to his closest friends. The weekday phone calls heading back to his dorm, his voice lit up with excitement about what he’d just learned in class. The way he never failed to say “I love you” as he jumped out of the car to hang with his buddies, headed upstairs for bed or plopped into my lap in our home office.

I had to let go before I could remember. What I wish I could do over. What I never got a chance to say. Like a wall, these “if onlys” kept me from the beauty of those days, blocking me from what was rightly mine.

I have learned to sit with my grief. To invite it in, knowing that it carries Jimmy at all ages. The easygoing baby. The happy toddler. The sweet little boy who grew into a kind, gentle young man. The sum of our days together is so much more than what the cancer stole.

We walked through fire as a family, summoning a courage and grace I didn’t know we had. We refused to break, to give up hope until the end, to let go of each other. I do not have to relive the hardest moments to see the way they honed and shaped us. Like any parent, I have regrets, but time and distance have made space for me to see the ways I showed up, spoke up, paid attention, listened intently and loved Jimmy fiercely.

For a time, I let Jimmy’s death diminish him, trapped by the horror of what he endured and what the cancer and heinous medical treatments did to him. I clung to those memories as much as they broke me, fearing they were all I had left of him. I didn’t understand that Jimmy was here all along. That the memory of our precious fleeting moments and ordinary days would give me back my son. That he is here with me still. I need only close my eyes and invite him to join me.

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  • Jan Haag says:

    “I had to let go before I could remember.” I love how the “if onlys” blocked what was rightfully yours and how you’ve come to set aside those “if onlys.” The courage and grace that walked with you through Jimmy’s illness and after his death is what you give all of us who look to Salt Water as a place of refuge, and we are most grateful, Margo, for this space and the beautiful writing in it—not least yours!

    • Margo Fowkes says:

      Thank you so much, Jan .. not just for the lovely compliment but for reading my words, witnessing my grief, sharing your own and allowing me to post your beautiful writing on Salt Water.

  • Angie Kelly says:

    The way your family faced Jimmy’s illness was so beautiful. None of you turned away from the hard days, and you always made room for the good in life and looked for the joy in every detail. It was such an inspiration, and I love that you’ve found purpose in your grief to build this supportive community.

  • RememberKala says:

    It’s the ordinary moments I miss most too. OH how I took all those incredibly amazing “ordinary” moments for granted. Thank you for sharing this powerful message, for sharing your heart, and for sharing your incredible son with us!

    • Margo Fowkes says:

      Me, too. I just didn’t understand how much they would come to mean. Thank you for reading my words and, more importantly, for seeing me and sharing what resonates with you.

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