The pull to the keyboard is ferocious. I find myself sitting before this screen constantly. Then I loose focus. My thoughts clamor for attention. “Get me out! Turn me into black and white type!” I am desperately trying to commit to sitting here, frequently, until I can find some order in my thoughts.
Writing through Gregory’s transplant and his two years or so of healing was a focused Odyssey. My brain was singularly focused. I now have room to ponder topics other than Gregory and his acute state of health.
I’m committed to getting it out. Regardless of how it sounds or how scrambled my thoughts are. I am at a point where I am, once again, redefining my voice. Currently it’s confused, over stimulated, jumbled. Here’s to working through ME. Not just Gregory’s experience.
Today I met with Gregory’s new teacher. For the last two years, pre-school and kindergarten, he has been safely ensconced in a school community that was small. One where if he missed a truck-load of school, it really was no big deal. He enters first grade in 13 days. Public school. His first real transition to The Real World. Socially, emotionally and academically I am not the least bit concerned. Health wise? I find myself conflicted. Torn between listening to the whispering of my gut that tells me…. “He’s ready. He’ll be OK.” and the reality of blood work, the fact that he has donor marrow and the insecurity of this experience. Germs. Germs have me terrified.
During his annual follow-up in June, we were given the green light to get him re-immunized. Freaking fantastic, right? Yet, until we finish his cycles and I have those titres in my hot little hands, I have zero belief that he is adequately protected. Not to mention that he has a decreased anti-body count. Will it be enough? Will he be able to stay out of the hospital this year? Will he spend weeks out of school avoiding Pertussis, Chicken Pox, Flu?
Then I hear the whisper: “He’s ready. He’ll be OK.” Quickly, behind the whisper, sneaks in a reminder that right now, in this moment, we are NOT in cold/flu season. I begin to doubt. I know too much. I don’t know enough. Don’t even suggest that I need to have FAITH. That does not help with my insecurity. Faith is not science and that is my current belief system when it comes to Gregory’s health.
Yet, shining so bright above all of these worries and unknowns, is the pure and simple fact: Gregory is entering public school. On time. With his brain intact.
Today, AnnMarie, Gregory and I were cruising along down the road. Gregory’s Hero Beads hang off my rear-view mirror. He could care less about them and I cherish them. They are my Talisman, my rosary. Every once in a while we go through them and talk about them while going down the road. Today Gregory was interested in the Balloons Bead. When a kiddo has treatment on their birthday, they get a little brass charm of three balloons. Gregory has three of them, representing his fourth, fifth and sixth birthday. The kids commented that he didn’t get one for his seventh birthday and isn’t that a bummer. My response turned it around…. Isn’t it AWESOME that he didn’t get one for his seventh birthday!?!?! Much agreement was had and AnnMarie exclaims: “We didn’t think you’d even MAKE it to your seventh birthday!”
Gregory: “What do you mean, you didn’t think I’d make it to my seventh birthday.”
Me: “Well, your cancer was really bad and the treatment for it is really bad, too. The fact that you survived it all is pretty spectacular.”
So there it is. This reality that we live with. So freaking grateful for today, so freaking terrified of yesterday and zero security in tomorrow. Trying to embrace tomorrow’s uncertainty. Not doing a very good job of it. I am a planner by nature and I still feel like I can’t plan a damn thing beyond the next five minutes. I never make promises or commitments. There are plenty of, “I’ll try” and “We’ll see”. I don’t want to disappoint anyone. Especially the siblings. I feel frozen in time. Suspended in reality, just waiting with bated breath. Is this really going to happen? Knowing that, as school begins, the frequency of having to say this is going to increase. School activities, time with friends, invitations to events. I KNOW that nothing is guaranteed, I KNOW that. I am just so sick and tired of living in suspended animation. Not just for me, but for Curtis and AnnMarie. Damn it. They deserve a piece of normality, too. They are aging every day and time is slipping away.
I have hopes that this year is going to be a ‘turning’ point for Gregory’s health. I have hopes that he is done with late-effects. I have hopes that he will maintain his status quo. What is hope, though? “Hope is the thing with feathers…..” I know too much. I don’t know enough.
Yes, although we have skirted death and severe late-effects, I am still filled with fear, anxiety and anger.
While equally filled with gratitude, love and wonder.
THIS is what survivorship looks like. THIS is why I still advocate. THIS is why I still fundraise. THIS is why I soapbox, shave my head, tattoo my body, network and yes, THIS is why I still need to write. Survivorship is not death, but it is hard. In it’s unique way.
We are mysteriously lucky. I get to wake up to THIS.
In honor, in memory, in defense,
FaceBook conversation HERE.