Dear Jack,
I’ve waited to write to you until I knew what to say. I still am not sure, but will send a note anyway, hoping it somehow helps someone.
My name is Shelley, but really it’s Mom. I’m Mom to 2 beautiful grown children, my babies. My son is the younger, bright, creative, intuitive. My daughter, the oldest is beautiful, brilliant, giving…and an Angel. Jen received her Angel wings in October of 2012. But I’m getting ahead of myself, though her transition to spirit, is not, by far, the end of the story.
Jen was diagnosed with Acute Myeloid Leukemia, AML, on Valentine’s Day of 2011, started chemo 2 days later and 3 days after that, married her Love, earlier than planned. She received 5 rounds of chemo, was pronounced in remission and sent on to live her life in August. Literally, the dear Oncologist who treated her said, “You go live your life, let me worry about leukemia.” After 6 weeks of bravely attempting to “live her life” she found out she had relapsed. She had 2 more rounds of chemo and then a Stem Cell Transplant from a dear unknown young man, we fondly refer to as Killian. She recovered well, though not easily, as transplant is the closest I’ve ever seen anyone come to actually fighting for their life, and I was a practicing hospital nurse for 16 years. She built a life day by day, until, 6 months later, the routine biopsy showed she’d relapsed again. 7 additional types of chemo did not produce remission so she entered the hospital in October of 2012 to participate in a Phase 1 trial, and remained in the hospital until, as she left her body and gave her brother a spirit hug, she found her healing. 20 months of fight, 26 years, 2 months and 4 days of life.
I don’t tell you all this to make you sad, though it probably does. I’m simply relaying the journey in a really short version. The twists and turns of the journey, the path Jen, and as an extension those she loved and who loved her followed is long and convoluted, filled with peaks of pure, unadulterated joy and valleys of desperation and despair. Everyone’s journey, no matter the circumstances, has those highs and lows. Everyones! We can relate to each other, though we have no hope of truly understanding another’s view, simply because we’ve all lived the happy and the sad, the ups and the downs, the gifts and the burdens. We. Are. Not. Alone.
I write this to give you a jumping off place to tell you of change. Change in Jen, change in me, change in those she loves. In the beginning, shortly after Jen’s diagnosis, I remember talking to my family and saying that if we did not allow this process, the fear, the worry, the anger, the unknown, to change us, then it was wasted. And that, for me, it was important to direct that change myself. I could see how easily bitterness, despair, sadness could become normal and I didn’t want that to be my change, my future, the “new me.” I’ve spent a lot of time in sadness, in profound disappointment, in fear and in anger, but I wanted, still want, to make sure those places are places I visit, not places I chose to take up residence. I refuse to live in fear, I refuse to live in sadness, though I did, do and will visit those neighborhoods.
But back to change. Really by change I mean learning. That which we truly learn, becomes that which we are. Jen had a practice, all through her treatment, of only giving voice to the goal. She saw, felt and lived the uncertainty, but she, like me, chose to focus on, think about, live for the positive outcome. Perfect healing. Looking back, we really meant perfect physical healing, not perfect ultimate healing, but when you think and want and wish and pray in the moment, you think and want and wish and pray for what you can imagine the best is.
The learnings are varied and the change diverse. I learned that time is a most precious gift. Jen’s stem cell donor gave us 10 months with our girl, we would not have otherwise had. I learned that some people will surprise you with their connection and gentle touch, some will disappoint you with their inability to participate. And I had no way of predicting who would be which type.
The men in the family, her Daddy, her brother, her husband learned that no matter how strong you are or how capable or how determined, some things just simply can’t be fixed. Helplessness is not a happy place for anyone, but in my experience, the men struggled with this much more profoundly. But they also learned how valuable simple presence is. And how to help another cry, by staying, by holding, by crying with, not insisting on a solution. This is such a valuable skill that is so rare. Helping someone cry.
One thing I’m supremely grateful for is the beautiful relationship my daughter and I solidified as she spent those 20 months in treatment and I served as not her only caregiver, but her primary one. We always had a good relationship, but I am truly privileged to have been gifted with a closeness with Jen that we would not have had, otherwise. I wondered for a while why I couldn’t remember the last words I’d said to Jen, or she to me. I finally realized because they were ordinary words. Why? Because we said the important words often and easily, I Love You. That’s really all there is, Love.
Since Jen received her Angel wings, I take my daughter with me when I do things I know she would like. A pedicure, a bacon cheeseburger, a cruise, all are done with Jen, on purpose. I think of her as I think of her brother, with every breath, I always have. I always will. When I am feeling selfish and human, I miss her with desperation. When I am feeling the selflessness that is true motherhood, I am thankful for her perfect healing, thankful for her present state of peace and wholeness and perfection. I am thankful I was given the gift of being her Mom. That is a gift that is mine forever, and I cherish it.
Jen, ILYEM!! I’ll see you tonight, in the sunset.
Love, Mom
Sincerely,
Shelley
Author: Shelley Rotramel: Jen’s mother and caregiver