The sun is hot in the mid-afternoon Indian Summer day. He steps out of his classroom, shakes his teacher’s hand farewell and stops at the top of the stoop. Scanning the sea of parents faces. Searching for me. Searching for his touchstone. I stand there and wait. It kills me to just wait. He sees me and bounds down the stairs. I drop to my knees and wrap my arms completely around his slight body. He squeezes my neck, as if to stop my breathing. It is at this point that I begin to breathe, again. We have been separated for six long hours and I long to have him within my eye sight.
This is picking up Gregory from school. He has proclaimed that I MUST wear my Momma Fedora so that he can spot me easier at pickup. I comply. Wholeheartedly. Morning drop off includes hugs & kisses, high fives and I Love You sign language, then ‘just one more’ hug and kiss.
We have been connected at the hip for 1,289 days. Three years, six months and twelve days. Every moment of this past time has been spent with me and if not me, my mom or his daddy. This is the first time EVER he has been in the care of people other than his family. This is a necessary step for his development. Yet, we feel our separation deeply. I can’t really focus when he is at school. I flit about and cannot settle on any meaningful tasks. I know this will fade, yet……. cold and flu season is quickly approaching. I can feel my anxiety building. My gut tells me his immune system will rock this season. My brain and what I have witnessed speaks otherwise. I am cautious, I am wary, I am on full alert. We are still taking risks, though. His system needs to be challenged and we will deal with it as it comes.
I can’t tell you if he enjoys school or not. If I were a fly on the wall during class, I’m willing to bet you that he is having a ball. He is making friends, has a phenomenal teacher and working with amazing materials. His life at school is vibrant. I think that being with me reminds him that we used to be together 24/7. Is he feeling guilty that he enjoys school so much? Maybe. Does he realize that a large part of my life revolves around his well being? Totally. Do we have a connection that cannot be put into words? Without a doubt. Does he get any of this on a conscious level? Not one bit.
We are taking it moment to moment, day by day. Making it up as we go along and riding this wave of survivorship.
There is an electricity when he and I walk the halls. Those that have followed us are acutely aware of how BIG it is that he is now a first grader and attending Montessori at Jefferson. Even the students are aware of how amazing his presence is. At least those that have been with AnnMarie for the last 1,289 days.
He was out last Friday with congestion and a cough. Monday was his first quarterly oncology appointment. Which meant he was out of school for two consecutive days. His classmates were concerned as to whether or not he was OK. Last Tuesday we did a Cancer Class with his classmates. It was an amazing thing to witness. We covered the basics: You can’t ‘catch’ cancer. Having cancer does not mean that you did something wrong. Gregory was sick for a long time, but he is better now. Our fantastic social worker brought along a couple of ports and passed them around for everyone to touchy feely. The kids were fascinated. We talked about G Tubes. Gregory showed of his G Tube site and there was much ‘Oooooo’ing and Aaaaaah’ing’ with some ‘Eww!’ and a few ‘You have TWO belly buttons!’ One kiddo gasped and exclaimed: “Just like Mary!” His little sister had a G Tube as an infant and immediately recognized that Gregory had something in common with his sister. So incredibly touching and cool. At one point, Gregory stood up, held his hands in the air and proceeded with: “Alright. Everybody get in a line and one-at-a-time you can FEEL the line of my port that is in my NECK VEIN!” Several of the kids would not go near it, but many were completely fascinated by it. As strange as this may sound, one kid even said he wanted cancer. Remember, these are first through third graders. Everything that we had been discussing was fascinating and how else to experience all this amazing stuff, than to have the disease that brings it to you?
A friend of mine confided in me that when her son and his dad were walking home from school that day he told his dad: “When I grow up, I want to have a job where I can figure things out. Like cancer.”
A conversation was started. These amazing kids allowed a tiny seed to be planted. Who knows what that seed will blossom into, but they have been exposed to something they might not have otherwise experienced. I can imagine, years down the road, they may have a friend with a kiddo diagnosed with cancer and will hopefully remember Gregory and the loving way we brought the world of childhood cancer into their lives.
Did you just call me a Pollyanna? Why, yes. I do resemble that comment. Regardless of how frickin’ nasty this Odyssey is, I have this eternal hope that we have touched lives and are making an impact. Does not matter how large it is. Even if people only pause for a moment, they have taken the time to think about something that would not have crossed their lives or minds before.
The other day, Gregory and I were leaving school, as always, hand in hand. A woman and her two kids were walking behind us. Gregory exhaled a big sigh and quietly said: “I love you, Mommy.” We eventually were walking side-by-side and out of the blue she blurts: “You must be so grateful that you get to walk your boy to school everyday.” Her son knows AnnMarie and apparently we had a conversation at one point over at Starbucks. She had been walking behind us, watching and looking at my tattoo. Her words touched my heart and imprinted on my soul. I said to her: “You have no idea how grateful I am.” I am glad that she cannot comprehend my level of gratitude. Although…. she and many other families have taken moments to pause in their own gratitude, while witnessing my gratitude. Gregory is that perfect example of ‘Don’t sweat the small stuff.’ While at the same time reminding you to CHERISH the small stuff.
I’m not sure how long this period of amazement will last, but I’m willing to bet that it won’t diminish for me. Every milestone, every day, month and year that we get to have Gregory in our lives is magical. There is no explanation as to why he has survived. There is no ‘reason’ for his survival. I do not believe that anyone involved with his care did anything special that affected his outcome. Even his bone marrow donor, Katie, was an incredibly LUCKY roll of the dice. So the fact that he is surviving truly is filled with magic. (Admittedly, with a huge portion of science, too.)
As much as I loath the word ‘miracle’, Gregory’s life is miraculous.
With love, magic and wonderment,