This blog post is from Connie (Jasmine’s Gram):
I have a To Do List on my kitchen island. It’s not a grocery list. It’s not a list of errands or chores. It’s a list of names of really good friends who have left messages or texted or emailed in the last few days asking the same question: “How are you? How is it going?”
I don’t know how to answer their question in a text and I don’t have the emotional energy to return the calls. So every day the list grows.
I am discovering that this hospital-discharge recovery phase of Jasmine’s leukaemia treatment has new difficulties, challenges and surprises. Not the least of which is mental and emotional fatigue that manifests in: tears over “nothing”; manic activity; guilt about Everything (especially The List); panicky fear that comes out of “nowhere”; wanting to isolate myself; and, of course, insomnia.
And that’s just ME! A grandparent. Christine and Jasmine have all that and more.
Even though we are “happy” to be home, there is a deep sadness that lurks just below the surface. This doesn’t mean we are ungrateful for the prayers, miracles (no fifth round), gifts, love, fellowship, kindness, lavish generosity of friends and strangers, and So Much More! We are overwhelmed with gratitude! We’ve been supported beyond our wildest expectations. We will never be able to pay it back (or forward) enough to show how much we appreciate it.
But ironically, our heavy-heartedness in light of such an outpouring of love and support simply adds to the burden of guilt we feel for having emotions that are anything but positive, euphoric, and grateful!
Our sadness does not come from Jasmine’s physical recovery. Every day she grows stronger and is able to do a little more. This morning I resisted the urge to film her as she demonstrated the line dance she learned in school three years ago. Her movements were slower and a bit stiff but she had the grin and the uplifted chin bang on!
For Jasmine, the physical toll has been severe. Her little body is ravaged: bruised, scabbed, scarred, denuded, emaciated. The damage to internal organs can’t be seen by the naked eye but various tests have alerted us to that reality. In addition, the emotional/ psychological toll, invisible and immeasurable, will take years to rebuild and will change her forever.
Of course, that’s not all bad. Some of those changes will equip her for greater maturity, empathy, tolerance, perseverance, endurance, compassion, spiritual depth and more.
But her new normal means she has a one in four chance of AML coming back. There is a greater likelihood of getting other cancers. Sunlight is no longer benign and she will have to protect her skin from exposure. She will need echocardiograms annually for life because of the potential heart damage from treatment.
But we’re home now! We dreamed of, prayed for, and anticipated with joy our final discharge day! It came and went and we were too tired, in every way, to celebrate.
We feel internal pressure to return to the old normal which included family meals, jobs, friends, church, fitness, gardening, camping…. But we know that our new normal means we first need to take time for rest, counselling, fresh air, good food, spiritual renewal, recreation, massage, light exercise, visits with friends, and no big changes or new challenges for a season.
So for those I love on The List and for anyone else who has been following Jasmine’s AML journey: How am I and how are we doing? Happy to be home. Saddened by suffering. Battle scarred but still standing. Aware that the recovery will take time. SO SO grateful to God and to our family, church, community, schools, coworkers, friends, employers, pray-ers, and supporters. We would not have chosen to travel this road alone and because of you, we didn’t have to.