Luka, the day after his bone marrow transplant infusion, July 4, 2015, reminding us that "I have arrived"
Goodbye Illusions, I Have Arrived.
One of the most interesting parts of life,I’ve found, is removing illusions. Moving past what might be. Some people have asked me howwe did it all this time — not knowing what exactly happened to Maks, not ever really having a clear diagnosis for Luka, and then not knowing where everything would go when Luka’s condition was considered “not compatible with life,” and the bone marrow transplant treatment determined to be “life threatening.” Personally, you get by through not creating illusions — the fear of what might be — take things as they come. (And I asked doctors and nurses a bazillion questions since it helped me understand what they knew and what they didn’t quite understand based on the cannon of medicine, thus Luka’s rareness). The world is not currently prepared for seeing things without illusions — just turn on the news or any debate — yet in the medical community, this way of being, almost Taoist at its core — is how countless, dedicated nurses, doctors, chaplains, social workers, physical therapists, child life therapists, custodians, and so many more go about their daily lives serving kids and families in the hospital and clinic. I learned — especially in the first 5 months of Luka’s life how to not hang onto waiting for that results, how to not imagine outcomes until there was evidence, how to see what was happening with changes in his symptoms as opposed to what I imagine is happening. Always grounded in the moment, but open to what is next. Perhaps that’s why I knew what was really happening as Luka was wheeled away from the 5th floor for the last time. As hard as that sounds, I never had the illusion that he would pass away, just as I never had the illusion that he would live on to an older age. And I think because of this, we didn’t have as many problems. Maybe that’s part of the reason why I’m still standing, coherently living my life, moving forward but taking pauses to stop and reflect as needed. And the need is certainly there when it presents itself. Perhaps that’s why I’m able to accomplish this most difficult of tasks.
Which isn’t that much different than initiating, teaching myself, asking for help, receiving it, being persistent when avenues didn’t work out — not creating illusion, but taking it all for what it is — which led me to 7:18 am today, January 28, 2016, when the Luka The Lion Foundation was officially incorporated in the state of North Carolina. In what is probably the most joyous of documents I have received from a governmental agency, the official letter reads: “To all whom these presents shall come, Greetings: I, Elaine F. Marshall, Secretary of State for the State of North Carolina, do herby certify the following and hereto attached to be a true copy of Articles of Incorporation of Luka The Lion Foundation.”
So very true, indeed. Goodbye illusions, I have arrived — my favorite Luka t-shirt. Photo taken on Day +1 after his transplant, and here we are Foundation Day +1. I couldn’t have written this story called our life better myself.
“To the Taoist, unhappiness is the result of being guided by illusions – such as the mistaken belief that man is something separate from the natural world. Problems, be they economical, ecological, or whatever, are caused by a failure to see What’s There. Unpleasant feelings come from illusions: fear from What Might Be (which hasn’t happened yet), sadness from What Might Have Been (which is- not necessarily what would have been), and so on. Piglets, living in fear of What’s Coming Next, What Can Go Wrong, What If I Do Something Foolish, and such, cannot enjoy and make the most of the present moment. Later, they look back and realize that they didn’t live it. And that realization makes them feel more inadequate than they already did. However, because of their sensitivities, their strong experience-filing-and-recalling memories, and their cautious, one-step-at-a-time natures, Piglets-far more than Eeyores and Tiggers, Rabbits and Owls-have the ability to rise to a challenge and accomplish the most difficult tasks, once interfering illusions have been cleared away.
