The only thing that was worse than having my child diagnosed with cancer was the shattered belief that it was cured. Insidiously, it came marching back.
Even at 4, Lexi loved to shop. Standing in a kitchen store, her hands placed insistently on her hips, she was begging for the coral sea-themed placemats and matching napkin rings. Oh how I marveled at her tenacity, most 4-year-olds I knew were still playing with their food. Even as a preschooler she was obsessed with crafting the perfect parmesan cheese bowl, a cradle for "nice leafy greens." Remaining Insistent and continuing to look up at me, I saw it. The tiniest nugget of a lump in her slightly turned neck. Talking myself off the ledge of knowing, we went home without the placemats. Later that evening, a fever that could not be denied
Sitting in the emergency room we waited for the doctor to tell us the results of the blood test I already knew.Talking at me in a frequency just slightly louder than the rushing in my ears I watched her mouth moving. "Bone marrow transplant, long-term survival, donor, durable remission." I heard her, and yet at the same time I was watching her drown in her own words. Like drowning people want to do, they want to take you with them. They want to crawl on top of you, steeling that last bit of air, your air, before the surrender. I heard her and as she pushed me under, I felt desperate.
Desperate will make you trade things; your pre-schooler's ovaries, the likelihood of secondary cancers, too-tight skin, bloody stools, blistering rashes and your baby's tongue sloughing like a snake into your hand. Desperate makes you a gambler with a chair placed squarely at a game called uncertainty. If played wrong,the hand results in death. Played right, it results in life, the quality and duration of which is not guaranteed. Desperate makes it acceptable to say yes to possibility of a lower IQ, sclerosed lungs and lifelong heart and thyroid problems. Desperation, so intrinsically linked with hope and magnified by love that it is experienced as one emotion and fueled by one core thought. Please God, let her grow up.
Lexi did not carry the fear of obliteration, fortunate, as I carried enough for all of us. The rare times I was in full acceptance of what the Universe, and God specifically had planned for her were the best days. It was the only days I felt true peace. This metaphoric tug-of-war I had with God was the impetus for low level anxiety most of the time. The ever-changing mood of hope had us on some days hoping she would make it through the day. On other days, I just hoped she would make it to twelve.
As a Cancer Mom I noticed everything. I noticed the way the doctor held his head when he said, "most likely." I noticed the pause in the sentence before she said, "if things go as planned." I could spot a mounting temperature in my kid at 30 feet, smell fear like a grizzly in a newly minted doctor and had a freakishly accurate ability to know when things were going wrong, well before they went wrong. It's exhausting really, this firing on all senses all the time. It was both my curse and my saving grace.
Lexi's cancer treatment culminated in a bone marrow transplant, the donor her 7-year-old brother. Slowly, steadily we shed the trappings of our medicalized life. The catheter that hung from her chest was removed and the smell of her returned to me. She saw her 5th birthday and 12th birthday and is now nearly 22 years old and in college. Her growing up has not been without it's challenges.There have been lingering effects and some serious health issues from the medical decisions we made long ago on her behalf.
My learning has been that of illusions. The realization that there was always a tension for me, a responsibility of sorts, that somehow the key to her fate was in my hands. That if I prayed hard enough, was vigilant enough, even psychic enough I could somehow re-write the future of her. The intermittent reinforcement contributed to this thinking. Over the years I have had to work hard to find that peace that was fleetingly felt when she was small, and I was in acceptance. I didn't know the future then and I do not know it now. I am as in control of it now, as I was then, which is to say, not at all.
The highest truth, the greatest knowing is that her soul's path is in God's hands. Naming any health issue, setback, or left as opposed to right turn in her life as "good" or "bad" would be to create the tension I have worked so hard to release. It is a daily practice, this remembering the infinite love that calls us, calls us to be the highest expression of ourselves, even in the face of adversity and when lost in the details of fear-based thinking. I have found my own answer to where heaven is, and I am not convinced it is a place which I can buy a ticket to, but rather an experience available to me only through unconditional love.
Tony Kushner, noted playwright, in a commencement address at Vassar College explained.
Hope isn't a choice, it's a moral obligation, it's a human obligation, it's an obligation to the cells in your body, hope is a function of those cells, it's a bodily function the same as breathing and eating and sleeping; hope is not naive, hope grapples endlessly with despair, real vivid powerful thunderclap hope, like the soul, is at home in darkness, is divided; but lose your hope and you lose your soul.