Beginning to break my silence.

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!”

*stab*

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.

Who could resist this face? <3

In honor, in memory, in defense,
MindiTheMagnificent
~Momcologist

FaceBook conversation HERE.

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About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
This entry was posted in survivorship. Bookmark the permalink.

9 Responses to Beginning to break my silence.

  1. Gina B says:

    You needed to write THIS and I needed to read THIS…Thank you, Mindi

  2. Mindi Finch says:

    Thanks, my friend. It's far from easy, but the alternative is incomprehensible. I know you understand. Love, love, love…

    • ENrique says:

      Wow, I think you will be a great OB. It seems like you have a real love for children, feimlias, and people in general. Sad to say that those qualities are rare traits in todays world. I believe not just anyone should be in just any job because you could be in a job that you hate and end up making everyone who comes in contact with you at work miserable. You have the joy and care to be great at your job and effect those you will be working around not only by your knowledge , but by your love for what you do.

  3. Sheri says:

    I honor your honesty and your uncertainty. Some peoples "boogie man" is larger than others and your way of looking it in the eye and dealing with what it is is awesome. I use that word, awesome because the cost of that looking is so huge. But love…that embodiment and motivation that in the end trumps fear and uncertainty and allows one foot in front of the other and that spills over on to others and helps them to look at their own personal boogie man – well, my dear your sharing of yourself as you are is that gift.

  4. Oh How I wish I could come to you, put my arms around you and hold you just for a moment. Every time I read you, I hear a little echo deep inside my heart and once more I find myself in awe at the fact that wires all over the world allowed me to connect with a kindred spirit, with a family that has so much in common with mine. Love you so, lady M xx

  5. Elena says:

    , she just couldn’t win the White House with a seplntired Democratic Party.And if Obama wasn’t stupid enough to put her on the ticket in 2008, he won’t do it in 2012. Biden has to stay. Not because Obama demonstrates strong loyalty; it’s clear he’d throw Malia and Bo under a bus in a second. Dropping Biden, though, would be a sign of failure for the adminstration.Plus, I mean, having Clinton as your veep would basically guarantee that you’re going to meet with a tragic accident very soon after your inauguration.

  6. Ipan says:

    I m very interested in fidnnig new ways to teach and it’s very important for students to have the opportunity to play with the subjects we want to teach.This video is an example!!!!!!!!!SO THROW OUT THE BOOKS AND GET OUT OF THE CLASSROOM.I try to tranform my english lessons in real life where english is not a subject but a language to use to have fun!

  7. Karess says:

    QuotesChimp Reviews journal. This not-for-profit regular (which, incidentally, takes no ad) is available of evaluating and different different products out there. Every so often that it contrasts and compares different sorts of private insurance along with the insurance businesses that put them up for sale. Request your librarian where to find straight back problems about your option. In addition to this, register. (The tackle for Consumer Reports is 10 1 Truman Avenue, Yonkers, NY 10703, (800) 234-1645.

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