"It's a long way to the middle" someone said to me earlier this week. Word. I've spent the last several days in reflection of just how far I have come in my pursuit of the proverbial middle ground nestled somewhere between the depths of my fears and the peaks of my faith. It's a challenging climb out and a long way to fall. In large part, the mental tug of war for balance in the middle has finally exhausted itself.
I heard from three of my faithful readers today asking about the silence found on my blog the past few months. I'm not entirely clear why I've shrouded this quiet space on the web in utter neglect. I can only conclude that I have spent an unhealthy amount of time in my head and felt a nagging sense of nausea in revisiting some of the events of the past several weeks. I have spent hours (somewhat) immersed in the sardonic, bittersweet vocabulary of many "self help books" that have mysteriously been arriving on my door step since January. 'CANCER: 50 essential things to do'. 'Cancer: Step outside the box'. And my personal favorite 'Crazy Sexy Cancer Tips' ( a wag of the finger to the mystery person who sent that one my way...I can not yet bring myself to remove the cellophane). This (air quotes) "literature" is packed to the gills with all of the sentimental nonsense that you yearn for with half of your heart and mock bitterly with the other half. What curious catechisms the all knowing keepers of the "good life" chant at you through the crisp white unrecycled pages of a pocket guide to cancer, but I digress. I am really going to try to stay on top of this blog. I have been removed from this space for so long that I feel overwhelmed in where I should begin.
Max has been on an interesting journey the last few months. I continue to be blown smooth away at his resilience and his attitude towards this terrible space in time that has become his world. I'm not sure if it is the lack of a relationship he has with his mortality or if it is the complete lack of choice that a child is born with...but Max's world spins on an axis of complete acceptance. His world is no acquaintance of fear or uncertainty and so he whistles right along on this oh so unpleasant path with the knowledge that a greener pasture is sure to be in sight soon. I cannot say it enough...MAX IS AN AMAZING LITTLE HUMAN. About a month ago he experienced a very severe allergic reaction to a very basic drug. It was hands down the scariest moment of my life to date. He turned Blue. He stopped Breathing. He hit the floor. The fear and panic I felt in that moment is beyond articulation...so I won't even try. He spent the night in the hospital and they have temporarily pulled that drug from his regimen. It is an essential drug for him in order to remain in remission. I'm not looking forward negotiating another dose, but that day is right around the corner. Max begins intensified chemo therapy tomorrow morning. This phase of treatment will last 2 weeks. He will be receiving chemo 4 days in a row. 3 days off. 4 more days in a row. The first dose tomorrow will be prefaced with a quick trip to the O.R. for the usual spinal fluid injection of chemo, a spinal tap, and a bone marrow biopsy. He is likely to feel his worst during these next two weeks. The hair that has been creeping it's way back onto Max's smooth little dome will begin to let go and fall away once again. Conversely, he will begin the first phase of maintenance after this short run of intensity. Life gets a whole lot easier for everyone about the middle of June. An energy packed Max will be in full swing maintenance by august and will grow back a wild and unruly mop of hair by the time we celebrate his 10th birthday on October4th. He is very excited about returning to the classroom this fall. I dream of the day he can return to being a normal kid again and after the next two weeks he will begin that journey to normalcy.
I suppose the biggest movement over the past few months has been towards the beauty of letting go. Letting go of control. Letting go of relationships gone sour. Letting go of a phantom place in time that is known as "yesterday". Letting go of fear. Letting go of anxiety. Letting go of pride. Letting go of erroneous impressions of life and invincibility. "Morning to wake you...that's all we've got". I stood witness to a pedestrian steamrollered by a moving car yesterday. It rocked my soul. She was just trolling along the sidewalk just minding her own business and it is as though she saw it coming and surrendered to the certainty of the situation. It serves as a reminder to me that life is fleeting...always. It serves as a reminder to me that tragedy exists even in the most cautious and controlled environments. Most of all it serves as a reminder to me that the only real choice we have in life is the choice of decision when one can be made. How powerful. We are nothing but a collection of the choices that we make and in the end we all have to pay the bill for them.
A special thanks to everyone who came out and supported Max's benefit on Mother's Day.
Ben Londa, Jessica Jarrett, Susan Antone, The Jolly Garogers, Stefannie Fix, John Pointer, Johnny Goudie, The Calm Blue Sea, Chatterton, Christopher Anton, Uncle Bruno, Topaz, Jennifer Habeck, Mike Judge, Sunny Haralson, Ashleigh Daniel, C3, Deb Henry, Nancy Cusick, and everyone else who donated their time and their money to Max's cause. We are eternally grateful.
